from Evening Standard, Wednesday 29 July 2009 08:54
Several weeks before seven-year-old Jack Brown died, he told his mother he wanted “to spend some time in someone else’s body”.
It was a profound insight from a little boy who had spent the previous three years fighting a rare but often fatal form of childhood cancer called neuroblastoma.
While thousands of people followed Jack’s story on the blog posted by his parents, and hundreds more fundraised to send him from London to New York for pioneering treatment, the disease itself followed a pattern of retreat and devastating relapse that by the spring of this year simply wore Jack’s small body out.
“On the last day when I took him to hospital, I had no idea how sick he was,” says his mother Yvonne.
Both his parents, 42-year-old Yvonne and Richard, 43, are detectives based in Barnet, north London, and he was well-known within the Metropolitan Police Force.
Earlier this month, the Met Commissioner, Sir Paul Stephenson, opened a new patrol base in Romford named Jack Brown House in his honour.
Officers of the Met and the NYPD organised runs and bike rides to raise money for treatment, and will continue with an appeal to fund research at University College Hospital and to bring new therapies for neuroblastoma from the US to the UK.
But for the Brown family — Jack’s brother Connor is 13 and his sister Rhian 10 — the pain is still incredibly raw.
“He was very tired but we thought it might have been because of the quite aggressive chemo he’d just had. But then he turned to me and said: I just want to tell you how much I appreciate everything you and daddy have done for me.
I wouldn’t have got through it all without it.’ Just like that. Quite formally. And there was a degree of finality to it.
I told him we weren’t finished fighting but I think he understood what was happening better than I did.”
Over those three years, Jack Brown’s small, elfin, often-smiling face appeared frequently in the press here and in New York, as the fundraising project — a huge undertaking in itself, amounting to almost £1 million — went into overdrive.
I meet them at their house in Barnet and Richard immediately apologises for its scruffiness: “We had better things to spend our money on,” he says gruffly.
As Yvonne talks, often through tears, a portrait emerges of a seven-year-old who never gave in to self-pity yet at the end understood that the disease was going to beat him.
“We had a remarkable few weeks in America just before he died when Jack seemed so well that it felt almost fraudulent.
He was on a trial of a drug and I think it masked the real extent of the illness but he was full of energy, as well as he’d been for 18 months.
He was able to think clearly for the first time in ages, and it gave him a chance to process what was happening to him.
When he got low again, not long after, he understood. That’s when he started to ask questions about what would happen.”
But there is another theme here too. As the Browns compare their experience of treatment here and in America, it is clear that children in the US have both a wider range of therapeutic options against neuroblastoma — a cancer of the nerve cells that primarily affects the under-fives — and a higher chance of surviving it for longer.
For uninsured Britons, these treatments come at a huge cost but several children are beginning to show positive responses that have given families real hope against a rare disease that kills 80 per cent of those children diagnosed with the advanced form.
The Browns, who met through the police force, first learned the word neuroblastoma in 2005, when Jack was three.
“I couldn’t pronounce it and I’d certainly never heard of it,” says Yvonne.
Both parents have immersed themselves in the science of their son’s illness yet Richard’s blog is often poetic in describing the family’s feelings as they entered into a nightmarish round of scans, clinical trials and surgery.
“It’s often called the great masquerader’ because the symptoms are pretty much what you get in any number of minor childhood illnesses. Fever, tiredness, a sore tummy.”
There’s a photograph of Jack taken on Christmas Day a few months before his diagnosis, fast asleep on his mother’s lap.
Looking back, doctors are convinced that Jack’s abnormal tiredness was an early indication of the cancer; shortly after he began to limp and found it hard to stand up.
Yet it took six weeks and two biopsies before neuroblastoma was diagnosed, and by then Jack’s disease had reached what is called stage four.
It was already more likely to prove fatal than not.
“At the time I was very angry that it took so long to diagnose,” says Yvonne.
“We were told that a tumour can double in size in five days, and though we now know that Jack’s cancer was slow-growing, for some children six weeks can make the difference between life and death.”
Neuroblastoma accounts for eight per cent of childhood cancers in the UK but the numbers affected are small.
Fewer than 120 children are diagnosed each year, which means GPs are unlikely ever to come across it. Three-quarters of those children will have stage four disease.
Jack was given a 40 per cent chance of surviving the first year, and in the next 12 months underwent 15 sessions of chemotherapy, two of radioactive iodine treatment and a four-hour operation to remove the main tumour in his left adrenal gland.
After raising £200,000 in just three months, the Browns then moved the whole family to New York so that Jack could begin a new antibody treatment designed to prevent recurrence of the disease at the Sloan-Kettering Cancer Centre.
Unable to afford expensive New York rents, they lived at the Ronald McDonald House, a subsidised hostel for the families of sick children — and a lifeline to the Browns.
“There was something about the spirit with which those children fought,” says Richard.
“They were resigned to it all, but not in a bad way. They didn’t seem to feel any despondency or despair or bitterness. It was their lot and they didn’t dwell on it.
The thing that upset Jack the most was seeing us or his brother and sister upset about what was happening to him.”
But there were complications and relapses, first in the brain and later throughout his body.
Jack was accepted onto a trial which involved inserting a reservoir under the skin, which delivered antibodies directly to his brain.
“There’s nothing that can be done in the UK after a brain relapse,” says Yvonne. “But this procedure is having dramatic effects on some children.”
In December last year, however, after another distressing relapse, the family’s stoicism finally failed.
“He was tired, we were all tired of fighting it,” says Yvonne.
“We made a decision that we weren’t going to put him through any more treatment. Then we all went to Cornwall and had a wonderful week.
We laughed a lot and cried a bit and Jack was really happy. Suddenly I knew I had to take him back to America and try again.
I wasn’t strong enough to sit back and watch him die.”
Yvonne and Jack returned to America a fortnight later. Then in April came the worst possible news: a scan revealed new cancer in Jack’s liver.
“When I saw the scan I had tears in my eyes and Jack said: I’m still going to get better, aren’t I?’
I took him aside and I told him that sometimes we don’t get better. He knew that other children [at Ronald McDonald House] had died.
With hindsight, I think that’s when he first realised that he didn’t have to fight.
There was another option. We had a conversation about God. We talked for five minutes and he was fine.
Then he ran off to play. I was scared of having that talk, and I didn’t want to do it any earlier, but I can’t say how much it means that we did.”
Jack died on 3 May in a children’s hospital in Burlington, Vermont, with his parents and his brother and sister by his side.
The older children, says Yvonne, have coped primarily through the support of friends.
“They’re doing well at the moment, but we recognise that may not always be the case … Our friends have always been there for us, taking the older two at short notice or getting them to us when we’ve been away with Jack.
We returned this time from America to a house cleaned from top to bottom and a fridge full of food. We’re hugely grateful for that love and support. “
Their focus now is on the work by Dr Mark Gaze at UCH, on a new form of radioactive therapy currently unavailable here, and on bringing the brain antibody treatment to the UK.
“We will get through [our grief], but at the moment it’s incredibly hard,” adds Richard.
“It feels like a wound, like an injury that at first was clean but as time goes on gets ragged and scarred and is often re-opened.”
“He was a very loving boy,” whispers Yvonne. “We’ve had a lot of support since we got back from America and we’ve been very busy but now it’s all calming down and that’s when you realise. I think it’s just hit us — what a very special child we’ve lost.”
Donations to further neuroblastoma research can be made at www.justgiving.com/policerun4jack