© Matthew Engel 2005. Reproduced with permission

The day the sky fell in

Laurie was just 13 when he was killed by a rare and aggressive cancer. His father, Matthew Engel, describes losing his best pal

First published in the Guardian newspaper U.K. Also published in Australia in the Age and the Sun-Herald

I still have a clear memory of Laurie that morning, standing by the car in his green school sweater and black trousers. I remember being struck by how tall he was getting. It was the first day of his summer term and he had just promised me - to appease my preference for more cerebral games than football - that he would have a try-out for the under-12s cricket.

First he had to attend what appeared to be a routine hospital appointment. He was getting close to his 12th birthday and, in his entire life, had never suffered anything worse than athlete's foot until, just after Christmas, he had begun to complain, quite literally, of a pain in the arse.

"Piles!" I said. "The Engel curse!" Indeed, I casually wrote in my diary one day: "L's piles are killing him." This turned out to be the most bitterly ironic sentence I have ever written.

Anyway, the GP said my diagnosis was nonsense. It was an abscess: common enough, and treatable with a simple operation, a thought that so terrified Laurie that, on the February morning when he headed to Hereford for the op, I had to tell him to stop fussing and remember there were children in hospital who were really ill. And that was the most bitterly ironic sentence I have ever uttered.

The operation was said to have gone fine, and a succession of doctors insisted there was nothing to worry about. But the pain did not go away. And by April a strange swelling had appeared round his groin.

We were, I suppose, up until this point, a thoroughly enviable family, living comfortably on an old farm in a beautiful corner of England: myself; my wife Hilary; Laurie, our home-baked son; and Vika, our five year-old daughter, adopted, after many adventures, from a Russian orphanage. We were not quite as happy as we bloody well should have been. But Laurie was the least of our worries.

We had just come back from two years in America, which had been a triumph for him. Thrust into an unfamiliar environment, forced to change his name (becoming Larry, because Americans think Lauries are girls), he had emerged from an uneasy start to become a star inside the classroom and out. He was popular, self-assured, funny and charming. Prone to be opinionated and cocky. But, as they say in Yiddish, he was turning into a mensch - a man in the best and fullest senses of the word.

He did not, however, turn into an American. Within days of returning home, he shrugged off his accent, rejoined his old friends and was breezing through Year 7 at his Herefordshire secondary school. He wanted to win Wimbledon, or be a sports journalist, at least one of which was thoroughly plausible - he was pretty good at tennis, but he was developing an absolutely lovely writing style. The world seemed at his feet. Unfortunately, all hell was breaking loose inside his body.

That April 20, I was on my way to Latvia to write a piece for the Guardian about the enlargement of the EU. I never got there. I first heard the word "tumour" from Hilary down an uncertain mobile line while on the train to London.

Ward 15, the oncology ward, at Birmingham Children's Hospital, is a modern addition to a Victorian institution. Oncology was a word I had never previously encountered, even in Scrabble. But it's a serviceable euphemism: "the study of tumours". The ward was opened in 1991 - post-Thatcher, early Major - and it shows: the construction was cheapskate. The adolescent bay comprises four beds, separated by thin curtains. Theoretically, it probably isn't cramped, but in practice each child has a parent sleeping alongside them, in camp beds. And it is normally full, as is the whole ward, so that the doctors often have to take charge of a dozen or more "outliers" on the general wards, amid the broken legs and appendectomies.

There is little natural light in the bay: the window is directly under a walkway. The airconditioning is primeval, producing more sound than air. In high summer, the place is a hellhole. And it's noisy even in winter, with four competing TVs and/or PlayStations, and families shouting above them. (That assumes you can score a functioning PlayStation - mad rules prevent patients bringing in their own on "electrical safety" grounds.) It's not somewhere one would choose to be ill.

There are a couple of isolation rooms, usually reserved for patients who are too sick to enjoy the privilege. Beyond them, there are double doors leading to the high dependency unit, a place mentioned only with a shudder. When we arrived, it was being swabbed down: someone had died from MRSA, according to rumour. There were a lot of rumours in Ward 15. Nonetheless, it was not an especially sociable place: the children were often too ill, and the parents too harassed and defensive. Laurie would be in and out of Ward 15 (and wards 7, 8, 10 and 16) for the next year.

Something, however, needs to be said right now. Laurie's disaster had already happened. His cancer could and should have been picked up sooner. Had a sample been sent for biopsy following his minor op, the disease would have been discovered 10 weeks earlier, which might have saved him. Had we still been in America, that would have happened. We were assured it would have happened in Birmingham, too.

But most children in Ward 15 seemed to have been misdiagnosed. British medical students are told if they see a bird on their lawn, they should presume it's a sparrow, not a lanceolated warbler. Paediatric cancer is rare, and non-specialists don't look for it. ("You know," one doctor told me, "a GP could go through their entire career and never see anything like what Laurie's got." "But the surgeon missed it, too," I protested. "The same," he said.) Several mothers told us they were written off as paranoid, or their children as moaning wimps. Once the problem is identified, however, the NHS roars into action.

The surroundings may have been tatty, but I have no reason to believe that Laurie could have had better care anywhere in the world. No one in Birmingham ever mentioned scarce resources. No one questioned the price - at least not to us. Decisions were made with due regard to international standards, and those dictated a treatment for Laurie that must have cost the taxpayer a million or more. That's my guess: we never had to think about it.

Those first few days seem in retrospect like a phoney war. The doctors made reassuring noises even when we were taken into the second most dreaded place in Ward 15: a softly-furnished spot known to everyone as "the bad news room". Yet the news was not that bad: paediatric cancer, they assured us, was not like adult cancer. The recovery rate was very good: 70, 80, even 90% was mentioned. We met the consultant assigned to Laurie, Dave Hobin, whom we were encouraged to call Dave. He was a jolly, rather Pickwickian figure. I said I wanted to take Laurie to watch Liverpool play. Go right ahead, he said smilingly, carry on as normally as possible. Amid his tears and fears, which were already real enough, there was even a part of Laurie, so Hilary divined, that was a little bit excited about being so special.

If that was true, it was beaten out of him soon enough. The first MRI scan was both forbidding and excruciating: the pain in his bottom - whatever it was - made lying still on it a torment. Then came the first operation, to insert what is known as the Hickman Line, the central line or, to the more baby talk-minded paediatricians, "wiggly". This is a brilliant invention, designed to avoid injections and ease into the patient's system all the necessary blood and drugs - and Laurie would need gallons and gallons.

But still there was some hope that it was all a false alarm. One night I passed Philip Gornall, the surgeon who had first pressed the panic button. He was staring at the mysterious images of Laurie's innards. "There's something strange about these pictures," he said. "This isn't developing the way I would expect it to develop." It might not be cancer after all, he hinted. "If it's a virus of some kind, we'll find the antidote and zap it," he said.

We soon discovered why he thought that. The suspicion was that Laurie was suffering from rhabdomyosarcoma, a rare but identifiable and usually treatable cancer that attacks the soft tissues, though only of people under 20. In fact, as Hobin explained to Hilary, Laurie and me next day, this was its evil twin: rhabdomyosarcoma alveolar, even rarer, more aggressive and much more likely to recur. Maybe a dozen British youngsters a year get this.

He obviously felt uneasy: jolly-seeming people do when delivering blunt messages. He kept repeating the phrase "to be honest with you" as a verbal crutch. The tumour had already reached stage three of the four possible stages. The chances of recovery, he said, are "middling". What does that mean? "Fifty-fifty." My head spun, and I was very close to fainting. Laurie burst into understandable floods of tears.

Thankfully, Hobin would never be that blunt with Laurie again. And sensibly Laurie was not invited a week later when we were called in for what I thought was a routine technical discussion. "You're not about to sandbag us again, are you?" I asked lightly. There was no answer, because he was.

Hobin had looked at the pictures again, more closely. The cancer had spread further than he first thought: it was already metastasising up towards the aorta. This was, in fact, stage four. He gave us a new piece of paper, detailing a new chemotherapy protocol. "I'm not going to take any chances with this," Hobin said.

I think of the summer of 2004 as the Book of Job period. Our old world disintegrated. Each week contained unimaginable horrors, for Laurie above everyone. Not taking any chances meant giving Laurie a course of high-dose chemotherapy, which could not possibly be repeated. His body could not take more. If it failed, there would be no ammunition left. We understood that, or Hilary and I did.

Early 21st-century chemotherapy will be regarded by future doctors with the contempt today's doctors reserve for leeches. The drugs are blunderbusses. They kill the cancer cells all right; they also kill everything else within range, especially the body's other fast-growing cells - the follicles of the scalp, for instance. Which is why the patient's hair falls out, as Laurie's soon did, in ugly hunks, one summer's afternoon. And they reduce the blood count, rendering already sick people vulnerable to every available infection. So just as the patient is recovering from a bout of chemo, they may well have to be yanked into hospital for a week of transfusions and antibiotics - at least half a dozen times, in Laurie's case.

The other effects are less predictable, though the hospital thought they had all the possible ones listed on a leaflet they gave us. In fact, all his senses reeled. Laurie's taste buds rebelled, as in an extreme version of pregnancy. Ever after, he would eat only intermittently, and if he said he fancied something, we had to rush out and find it at once, in case the moment passed.

His sense of smell went berserk. He could not bear to be in the same room as a cup of coffee or a dab of perfume; a roast in the oven or chicken soup on the stove constituted torment. A rare meal he was relishing one evening went uneaten because he got whiff of a sprig of mint. His hearing actually became more sensitive, so that, from the first dose onwards, he hated loud noises; he was never again to get pleasure from music. And the music that resounds clearest in my head is the tinkling of Ward 15's dripmachines, warning the nurses that it was time to take action: "Dee-dee; dee-dee; dee-dee."

Then there was the pain. Laurie was immediately put on morphine to ease the hurt from the original tumour. But no one told us morphine causes constipation, which was worse. To stop his weight loss, the doctors inserted a feeding tube through his nose and we set up a whirring contraption at home so this pink gunk could enter his stomach through the night. Laurie loathed it with a passion. When he was nauseous - which, with the chemo, was a regular occurrence - he would puke up the tube and have to go to hospital for them to reinsert it, very painfully. (Eventually, he just refused and we forgot about it.)

Meanwhile, we had Vika to contend with. From where she sat, being ill looked an effective way of gaining attention at her expense. She wanted to be poorly, like Laurie. On May 22 2004, the eve of her sixth birthday party, she got her wish. Bouncing on our trampoline, she cracked a bone in her ankle and ended up in plaster - to her mild satisfaction, and to the horror of the teachers at her then-school (we soon moved her), one of whom announced that she could not cope.

Somehow, we had to. At first, the phone rang constantly. I believe now that everyone we knew wanted to say and do the right thing; it's just that some had a better sense than others of what that was. We weren't exactly consistent ourselves: if people called for news, we grew impatient with them; if they didn't call, we resented it. An old university friend of mine, a former golf champion now in a wheelchair, summed up the situation perfectly: "You don't want sympathy," he said, "you want empathy."

Some people tried to tempt us into alternative remedies, none of which seemed remotely relevant to Laurie's disease. Some tried to be reassuring, telling us about friends of theirs who had conquered cancer. There are at least 200 different forms of cancer, so that was as helpful as saying they knew someone who had fought off a nasty cough. Some acquaintances were solipsistic: "I'm sorry about your news. I'd hate it to happen to my son."

What we needed most was practical support. Before April 20, Hilary was worried that Laurie hardly needed her any more: at that age, he was more my boy. Now she reverted - instinctively, with a quiet heroism - to a form of motherhood as intense as breastfeeding. This meant we were desperate to get help with Vika, if I was to do any semblance of work. We kept failing.

It's hard to find a nanny to work in a crisis-ridden household situated in deep countryside. One left after three weeks, saying she was going to work in the US; she was still working nearby, in a less troubled home, a year later. The next quit after 10 days, having been asked to "wash up a plate that wasn't Vika's". A third never arrived.

Then there was Colin, who helps us with the garden; he was stung by our bees, had an allergic reaction and nearly died. I think that was the week the dog had a stroke, lay inert by the front door and was carted off to the vet where, it was assumed, she would be put out of her misery.

A neighbouring farmer, Bob, told me not to worry. He had been a rancher in South America and once went through a phase like ours. Both he and his horse were desperately ill. When the horse died, the local Indians told him to be happy: "He has died for you, señor. Now you will live." Bob recovered. But so did our dog, which, under the circumstances, made me distinctly uneasy.

Laurie also showed signs of recovery. The original tumour started to shrink; Hobin pronounced himself pleased. In early August, Laurie endured the final chemo dose of the first phase, after which they had promised him a break. Things appeared to be stabilising. We even made tentative holiday plans.

Hobin assumed that I would have been on the web, checking up on him. In fact, it was months before I could face doing any such thing, whereupon Google told me I was misspelling alveolar. Nor did we ask what that original 50-50 chance had now become. I later discovered the official position was "a 20-30%" chance. But those kind of figures, familiar to everyone who knows a cancer patient, are based solely on mathematical calculations of past performance. They do not take into account a doctor's gut feeling.

Whenever things seemed to be going OK, I would sometimes pump Hobin or another doctor in the hope of reassurance. But I never got it. They always conveyed the impression that they didn't really believe Laurie would pull through. On the other hand, they never seemed to contemplate surrender.

In August, Hilary and I did. This sub-crisis began the night of the 2004 Olympics' opening ceremony and I was on Birmingham duty while Hilary was back home - always a sign that Laurie was up for male bonding, not just the constant nursing and reassurance that only Mum could provide. There was every chance he would be home in a day or two. After a while, he said he was sleepy, and I went out for a lone drink in some dismal Brummie pub.

I returned to find him in agony. Within a few hours, every imaginable organ was wired up to something. And, unimaginably, he had a catheter, fitted at 3am. Even more unimaginably, the thick double doors swung open, and Laurie was wheeled into the high dependency unit. Later that day, the duty consultant took me into the bad news room and said he had veino-occlusive disease, a rare side effect of chemotherapy (and, we learned later, unknown after the particular drug Laurie had just had - would we mind if they wrote it up for the journals?). Essentially, his liver had packed up and he was retaining fluid.

Yes, it could be treated. In the meantime, his liquid intake had to be restricted: no more than 300ml a day, barely a half-pint. From infancy, Laurie had always been a big drinker - juice, usually - and this had survived his general loss of appetite. It was the cruellest torment yet. Here was our big, brilliant son, lying in an oxygen mask, hairless, with a swollen belly, and tortured by thirst. That was the first moment of complete despair.

But he battled back. The morning they said the 300ml could go up to 600 was one of glowing victory. And the high dependency unit actually turned out to be the luxury wing, where the best nurses gave almost one-to-one care in the nicest rooms. I argued like crazy when they turfed him back on to the ordinary ward. By then, the Athens Olympics - an event I was supposed to be reporting - was over. We had hardly noticed it.

By September 2004, our lives had regained a little equilibrium: "the new normality", I called it. Laurie returned home, and even went back to school for a time, while the doctors considered the situation and pronounced that surgery - the normal strategy for sarcomas - was impossible because of the site of the tumour, and that the next stage would be radiotherapy and "maintenance chemotherapy", much lower doses to keep any recurrence at bay.

The radiotherapy was under the control of Dr David Spooner, a tall, shambling, rather elusive figure who was a great enthusiast for his branch of the trade. The Americans, he explained, had much better success rates than the Europeans with this cancer, because they went hard on radiotherapy, and worried less about side-effects: possible, probable and certain, which he then listed in grim detail. I could only nod very weakly. He was not reassuring either. "I have great respect for rhabdo alveolar," he said. Six months earlier, I would have assumed he was talking about a Swedish Nobel prize-winner.

This treatment took place at another Birmingham hospital, the Queen Elizabeth. It took two months - five minutes a day, five days a week, not a convenient regime when you live two hours away, but made tolerable by the Rhys Daniels Trust, a charity that provides flats for families in this situation, and by the hospital's flexibility with our appointments (late on Mondays; early on Fridays). One radiotherapy treatment was nothing, of course. But, as with x-rays, there is a reason why radiographers run.

But Laurie's life did become a little more tolerable. So did Vika's, as the blessed Andrea came into our lives and helped look after her part-time. And there were even small moments of pleasure, as Laurie began to take short walks (never his favourite activity), regained his enthusiasm for whipping his mates on video games, and even got back some appetite. The day he asked for more Chinese chicken wings was one of pure joy.

Christmas and New Year were OK, actually, spent amid friends and laughter. There followed two whole months when Laurie was never once rushed back to hospital with a raging fever. All his pain now was palpably the result of the treatment rather than the tumour. And in March, Hobin called a halt to the chemo with one course to go, to avoid further side-effects. "He's had a good whack," said Hobin. "What do we do now?" I asked. "We watch," he said, "and we wait."

Laurie regained strength with the springtime. His hair reappeared. He went back to school - not fulltime because he tired so easily - developing a skilful way of working the timetable so that he never quite managed to be well enough for maths. He tried valiantly to join in at football. He returned to tennis, hitting the ball as neatly as ever without yet being able to run much. He weighed himself daily, and each kilo regained was a cause for cheering. On May 21, we organised a joint birthday party for the two children - ages 13 and seven - and invited all the neighbours, loads of them, who had helped us through the grim times. There was a secret subtext: we knew the good times might be brief. We didn't know how brief.

A week later, we went on holiday to Devon, with our friends, the Watkins family, whose son Arthur had been Laurie's pal since they were toddlers. They rushed out to the tennis court, as of old. That was May 28, Laurie's actual 13th birthday, and we celebrated with a cake and a small party. Late the following evening, I was lying in the living room of our rented cottage, a little bit pissed. And I remember the thought passing through my mind that, for the first time in over a year, I was rather mellow. At that very moment, there was a piercing yell from the next room: Laurie had touched the side of his head, and felt a bump.

The next day, a glorious Bank Holiday Monday, was spent at the hospital in Exeter, where local doctors fingered his head and made hurried phone calls. I was called into a private room to speak to the duty registrar in Birmingham. He was sure the cancer was back. That evening, Hilary and I took a long, melancholy walk through the fields, while trying to maintain a vaguely upbeat front for Laurie.

Yet when Hobin returned to work on the Tuesday, he broke with all precedent and cheered us up. He wasn't so sure. "This isn't what I would expect," he said. "If it's going to come back, it's very unlikely to be so far from the original site. It could be anything." He told us to enjoy our holiday, and not to panic.

Even when he examined the bump a week later, he was uncertain: "I don't know what it is," he said. But Hilary knew: she knew the night Laurie said to her, "Mum, I've got a pain in my kidneys." And Hobin knew once he saw a scan showing tumours not just on Laurie's head, but on his back and side as well. The trip to Birmingham would be too dreadful, so I had asked Hobin to phone with his findings. It was Monday June 13. "This is not a good news call, I'm afraid," he began. He was careful not to say that Laurie would die. He merely said there was nothing he could now do to prevent it.

The final phase lasted more than three months. Hilary and I took two decisions, which we never regretted. First, Laurie was to die at home, surrounded by his family, not in a hospice, and certainly nowhere near Ward 15. Second, we would do our utmost to shield him from the whole truth: he must never, ever, be entirely without hope. This was resisted by several healthcare professionals - some of them good friends - who thought he should have the chance to prepare himself.

We thought that was wrong where a 13-year-old was concerned, certainly this one with all his zest for life. Hobin said if Laurie asked him point-blank, he would have to tell the truth, which was fair enough, but another reason to stay away from Birmingham.

Hobin prescribed a new course of oral chemotherapy, to be taken at home, designed for "stabilisation", not cure. Now I did work the web, frantically hunting a lifeline. But the friends who had talked of alternative cures had gone silent in the face of the sheer brutality of Laurie's cancer. I tracked down the professor at the University of Utah leading the research into rhabdo alveolar. He replied politely, but said this was a "mean" form of cancer and that a cure was nowhere in sight. He said Laurie had had the right treatment, and offered no miracle, no experimental drug, no last hope.

Slowly, very slowly, Laurie began declining. He more or less stopped eating again. The doctors began disappearing from our lives, to be replaced by nurses. His death was not in dispute, but there was a strange vagueness not only about when, but how.

Morphine patches kept the pain at bay, but made him ever sleepier. Visits from friends became uneasy as he lost heart for PlayStation duels and his last great craze, Japanese Yu-Gi-Oh! cards. But Arthur's mother, Ruth, would soothe him by massaging his feet. He remained beautifully polite, always thanking people for coming to see him and asking how they were.

But he couldn't watch football or the Ashes series that was gloriously unfolding: too tense. He took refuge in his old TV favourites - The Simpsons, Friends, South Park, Little Britain - where the unexpected occurred within predictable parameters. One day he stopped laughing even at these. He stopped reading. Eventually, he more or less stopped speaking. I began to break down regularly, as I had in the early days. I no longer knew what was selfishness (my own self-pity) and what was selflessness (my hatred of his suffering). Then I began to think the inability to distinguish was perhaps a definition of love.

But we don't believe he was conscious of his fate, and are grateful for that. At the end of August, he refused to watch the US Open tennis because, he said, "It's too painful to watch my favourite sport, when I know it will be months before I can play it again." If only. Still, he battled, and occasionally would surprise us. Hilary was with him almost constantly, barely aware of the rest of the world. Once, in the middle of the night, Laurie begged to hug Vika, and I fetched her from her bed and they embraced instinctively, neither fully conscious.

Outside, the September days were tauntingly sunny and warm. And still he would not give in, until - with the sun rising on yet another golden autumn day, September 22 2005 - Hilary went to have a bath, I lay down beside him and dozed while Vika played at the foot of the bed, and he quietly slipped away. Peacefully, as they say.

We held what we decreed was not a funeral but "a celebration of his life". Three hundred people stood on our lawn on a sunlit afternoon, looked out on to the Black Mountains, and we sang and laughed and reminisced. I asked them to remember him not as "Laurie, who died, but as Laurie, who lived". People said they will never forget the occasion, and if that means they will never forget him, it will have served its purpose. Then we buried his husk in the village churchyard.

His friends in Washington said they intended to plant a tree for "Larry". So on the spur of the moment we flew over for the weekend two weeks later. Not many people get a ceremony on both sides of the Atlantic: I told the gathering that this meant he ranked with Churchill and JFK, and that Laurie's response would have been: "Cool."

For us, this celebration was more moving than our own, because it came from the kids, and they came purely to honour him, not to pity us. They had no memory of his illness, which was merely a distant rumour. They just remembered the sporty boy with the quirky English wit, and put together a wonderful book of memories of him. A nine-year old girl, kid sister of one of his buddies, wrote in it: "I remember that he would always laugh at something that was not supposed to be laughed at." And we can still laugh at that.

The death of a child is like no other. I've lost my best pal, and half my hopes and dreams. Hilary and I will never "get over it". We don't want to get over it. The challenge is to ensure that we can accept Laurie's death into the narrative of our lives without destroying everything else that we touch.

This is an expurgated version of the story. It cannot remotely convey all Laurie's suffering, all his anguish, all his despair - nor the vibrancy of his personality. He hated pain, and he had heaps of it. He loved life: "I want to go shopping, play football and eat doughnuts like everyone else," he said at one point. It cannot convey our own inadequacy in comforting him.

It cannot convey the sheer desolation we feel now - the stabbing pain that hits us both when we contemplate the things Laurie could, would and should have done, or notice something associated with him: a half-deflated football in a forgotten corner or our Monopoly set or a packet of Skittles. My eyes well up whenever I hear Liverpool have scored, because I can't tell him. It cannot convey the slow realisation that has overtaken Vika, as it seeps in that he will never be there again, either hugging her or biting her head off, as older brothers do. It may be decades before she grasps the profundity of her loss.

After Laurie died, someone asked me if there were any positives to come out of the experience, a question that took me aback. I couldn't think of any at the time, but I have been trying. I have a more relaxed view of my own death now, I suppose, but that may not be a positive. And I have a more relaxed view of other people's foibles.

The crisis brought out the best in almost everyone. Towards the end, we sometimes had traffic jams on the drive caused by neighbours bringing us hot dinners. We had to haul my sister-in-law Liz (to take just one example) off a plane to Spain because we needed her help at home. What mattered is not that she said yes, but that we knew she wouldn't even hesitate.

I can't say either of us has found God, but I am at least looking in that direction: I want a word. But if there is meaning or purpose or logic in this, we can't see it. In the early stages of the illness, I thought - superstitiously, maybe - that I was being punished. I thought of all the shitty things I'd done, the beggars and Big Issue sellers I had walked by. But Laurie never walked by a beggar: he was the softest touch in the world. He was punished with all the pain.

There seems no medical reason to explain it either: our families have both been pretty robust. I can only believe it was blind chance that brought Laurie a disease of such rarity and cruelty. We had always tried to be cool-headed parents: even when a motorised sniper was terrorising Washington, I told the kids that they were far more likely to be run over by a car than shot from one. But here we were brought down by a true chance in a million: something so rare that most doctors have never heard of it. A lottery win in reverse.

We have received hundreds of lovely letters (and I apologise if anyone is still awaiting a reply). Some people - journalists, mostly - admitted they could find no words. Others tried to find comparisons; one seven-year-old told Vika about her dog dying. For some societies - pre-20th century Britain, Africa now - the death of a child is not a desperately rare occurrence. Ours, happily, is different, and I find myself clinging to the handful of friends who have first-hand appreciation of our situation.

One letter stood out. It came from a friend who had himself lost his son. It read as follows:

"This much I'm reasonably certain of, that there are much worse emotions to have to live with than sadness, however vast and deep that sadness might be. It can be uplifting, invigorating, strengthening, motivating and, above all, a powerful reminder of how much Laurie still matters, and always will. It can be other things, too, but don't let it."

I am still awaiting the uplift, invigoration and strength. But we have found the motivation to start the Laurie Engel Fund. What we discovered is that the problems we faced were not unique. Cancer among older children has been rising fast. Their cancers tend to be rare, so are especially prone to misdiagnosis. The symptoms can be falsely attributed to growing pains, sports injuries or (sometimes) drug abuse. The death rate is unnecessarily high.

And the treatment - in the broadest sense of the word - is often inappropriate: even the tone of voice on Ward 15 was sometimes infantile. The alternative for most older teenage sufferers is to be placed alongside adults, which can be worse. So we are working with the Teenage Cancer Trust and aiming to raise £100,000 in a year to fund a state-of-the-art private bedroom, which Laurie would have loved, in a new specialist unit aimed specifically for older children - in Birmingham, if the health authority ever gets its act together and agrees to build one. Laurie wanted to make a difference: and if he can achieve that, it will be a positive.

There was another small thing. After the celebration of his life, I realised that the 300 pairs of feet that had stood on our lawn had scared off the moles that had been digging up the cricket pitch where Laurie and I did battle. But then again, I have no further use for the cricket pitch.