What my brave little nephew’s cancer battle taught me about how to help a loved one who’s desperately ill: GUY ADAMS says to do your homework on cancer and NEVER give up hope
A few days ago, my brother Tom uploaded a ‘morning run’ to Strava, the popular fitness-tracking app that allows exercise junkies to share their exploits.
It was no ordinary jog. Instead, he set off from Wembury, a village just outside Plymouth, at exactly 8am on Saturday, and headed north, without stopping, for 37 hours, covering 117 very hilly miles in the process.
The Strava post contains several pictures of Tom in various states of fatigue. But the most striking photo is the one that explains why Tom had set out on this extraordinary journey in the first place.
Taken on April 10, 2020, it shows Tom’s son Barney in the paediatric intensive care unit at St George’s Hospital in Tooting, South London. Then aged just 13 months, the poor boy — my nephew — is lying motionless in bed, his head wrapped in bandages and an array of medical devices attached to his face and chest.
This awful spectacle is what greeted Tom and his wife Hannah all day, every day, for almost a week as they sat at Barney’s bedside waiting for him to come round from a 12-hour operation that aimed to remove a malignant tumour the size of an orange from the base of his brain.
Yet cancer is a stubborn adversary, and over the ensuing eight months, Barney would undergo two more major brain operations, each of them similarly traumatic.
Showing quite extraordinary resilience, he also completed long and gruelling courses of chemotherapy and a state-of-the-art form of radiotherapy, called proton beam therapy.
Cancer is a stubborn adversary, and over the ensuing eight months, Barney would undergo two more major brain operations, each of them similarly traumatic.
Throughout the long ordeal, Tom and Hannah chronicled proceedings via pictures and videos, many of which were uploaded to our family’s WhatsApp group. So it went that we saw Barney, once a strapping toddler (who’d weighed a whopping 11 lb 9 oz at birth) grow pale and skeletal and lose his hair. Frequently stuck at home, owing to a succession of Covid lockdowns, our phones would ping with footage of him being strapped to grisly-looking machines, or wired to drips.
During this terrible time, there were lighter moments, too: Tom and Hannah also photographed Barney’s visits to playgrounds with his elder sister Scarlett, now five, where he was launched down slides and pushed in swings, plus occasional trips to zoos and wildlife parks, where he liked to talk to the animals.
I was reminded of these images these past weeks amid the coverage of Dame Deborah James, whose struggle with bowel cancer has captured the nation’s hearts. Much like Tom and Hannah’s pictures of Barney, her social media posts have flip-flopped between glorious highs and shattering lows — all of which has contributed to perhaps her greatest legacy: to help normalise talking about cancer.
I say this as someone who now knows first-hand how difficult addressing the ‘Big C’ feels when — and, I’m afraid, it does tend to be ‘when’ rather than ‘if’ — it strikes someone close to you. How do you cope with the pain? And grief? And worry? Especially if that person happens to be a child.
Barney’s illness was cruelly timed. He was first diagnosed with brain cancer during the chaotic early weeks of the first Covid lockdown, in March 2020.
At the time, I was holed up at home in Wales, with my wife Katie, attempting to juggle a full-time job with the demands of home-schooling three small children.
Tom and Hannah had been trying to do something similar, albeit with two kids, at their home in Surbiton, South-West London.
Barney, for his part, was clearly unwell. Previously a healthy and happy baby, who spent his days crawling around the house and crashing into furniture, for several weeks he had been lethargic and clingy.
More worryingly, something was wrong with his balance: previously able to clamber up stairs and haul himself upright on furniture, like an ordinary 13-month-old, he seemed to have lost strength in his legs. Every now and then, he would fall on to his back and start crying, unable to roll over.
The GP hadn’t been too concerned. But Hannah wasn’t convinced, so visited a private paediatrician in Wimbledon for a second opinion. Having studied videos of Barney, he advised her to head to Kingston Hospital where, after two days of tests, doctors noticed his head seemed severely swollen and decided to perform a CT scan. And that was the moment their world turned upside down.
Barney’s illness was cruelly timed. He was first diagnosed with brain cancer during the chaotic early weeks of the first Covid lockdown, in March 2020. At the time, I was holed up at home in Wales, with my wife Katie, attempting to juggle a full-time job with the demands of home-schooling three small children
The scan showed Barney had what doctors called a ‘mass on his brain’, which had grown so large that spinal fluid was being prevented from escaping down his neck. That in turn was causing huge pressure to build up inside his skull, which had expanded by several inches, leaving him in unspeakable — and potentially fatal — pain.
Barney was rushed by ambulance to St George’s Hospital. That night, he underwent emergency surgery to drill a 2 cm-wide hole in his skull that would release the pressure via a tube.
To Tom and Hannah’s horror, a more detailed MRI scan then revealed the mass was in fact a tumour measuring 9 cm across. It was sitting deep inside his posterior fossa, a small space adjacent to the brain stem, the area at the base of the brain adjacent to his spinal cord.
On April 8, surgeons carried out a 12-hour operation in which they were able to remove roughly two-thirds of it. On May 4, they went back in, this time from a different angle, but were unable safely to take out much more.
For those unfamiliar with brain surgery, it’s difficult to state just how harrowing each of these procedures were. In brief, Tom and Hannah knew that one small slip could leave their child deaf, or blind, or paralysed.
‘You have this glimmer of hope, because there’s a chance they could remove the tumour, which in turn might save your child’s life, but basically that day is pure terror,’ is how Tom describes it.
‘There’s terror that something might go wrong, and terror that even if it doesn’t, they might discover that the cancer can’t be removed, which in turn is a death sentence. And even after they’ve finished, the days when you are waiting for him to come round, not knowing what state he’ll be in when that happens, are torture.’
Barney had things immeasurably worse. In enormous pain, and too young to have the slightest understanding of what was going on, he became terrified of strangers, since almost every new adult he met would administer an injection, or change one of his dressings, or do something vaguely unspeakable to the tubes running up his nose or into his chest.
Often, he would wake, terrified, in a strange hospital ward, covered in tubes and unable to move.
Meanwhile, Barney’s cancer — which biopsies revealed to be a rare form of tumour called an ependymoma, which affects just 50 children in the UK each year — was intertwined with important nerves. That meant that complete removal, which was likely to be necessary for a full recovery, would be exceedingly perilous.
He was therefore sent to have nine weeks of chemotherapy at the Royal Marsden Hospital in Sutton, South London, in the hope that it might shrink, or at least soften, the remaining tumour.
Covid restrictions meant he was quite often confined to a tiny room there with a single parent, for four straight days. It was a long, hot summer, in the middle of a global health crisis in which friends and family were unable to visit. For Tom and Hannah, the experience was terribly lonely and isolating.
Back in Wales, I also found the situation difficult.
Like many a parent, my days in that first lockdown were spent doing Joe Wicks’s workouts, making sourdough bread and going on long walks with the children.
Was it really fair, I wondered, to ring Tom and Hannah when I’d inevitably end up chatting about the lovely time we were having? Would it be appropriate for me to ask probing questions about their child’s appalling illness, and his chances of recovery? Was it overstepping the mark to pass on advice I’d received from friends who work in medicine? Was I in danger of bothering them? Or being a nuisance?
Tom and I had both enjoyed a privileged and happy childhood, and through our 20s and 30s built an easy relationship based around brotherly mickey-taking and a shared love of sport, fishing and practical jokes. Suddenly, in my early 40s, I found our once-carefree existence had turned incredibly serious. Concerned that I might say the wrong thing, I found myself waiting for Tom to call with news, rather than picking up the phone to contact him.
This, I now realise, was exactly the wrong way to address the crisis. When a friend or family member is battling cancer (or suffering any other major trauma), the correct way to act is to be more rather than less pushy than usual.
‘When someone is in our situation, people’s natural instinct is often to recoil, because it can be uncomfortable to talk to a person whose child is sick,’ says Hannah.
‘You may not want to be a nuisance, or say something upsetting. But the truth is that you should actually push yourself to do the exact opposite and to reach out.’
A second lesson that awful period taught me is that if you, or anyone close to you, is ever diagnosed with a life-threatening illness, it’s absolutely crucial to seek extensive advice about how best to treat it.
In a world where we shop around for cars, homes, holidays and groceries, I find it baffling that many people diagnosed with cancer simply follow the course of treatment recommended by the first specialist they happen to be assigned.
During the weeks that followed Barney’s diagnosis, and throughout his subsequent chemotherapy, Tom and Hannah read extensively about ependymomas and sent Barney’s scans to the world’s leading specialists for advice.
I believe this probably saved his life, as it allowed them properly to scrutinise the various treatment plans that doctors recommended.
On one occasion, for example, following Barney’s second operation, they were advised by an NHS oncologist to extend his chemotherapy course to 14 months. Before agreeing, they asked the oncologist how many children in Barney’s situation he’d actually cured via chemotherapy. The answer: none.
They soon decided that Barney’s best chance of survival would first require a brain surgeon to completely remove the entire tumour.
After taking advice from a number of experts, they decided the man for the job was Conor Mallucci, a hugely respected NHS brain surgeon at Alder Hey Hospital in Liverpool, who often takes on complex cases where other surgeons have struggled.
On August 20, Barney went into his operating theatre for his third operation. Several hours later, my telephone pinged; Mr Mallucci had just walked into the waiting room and uttered three simple words: ‘I did it.’ And just like that, after five terrible months, Barney’s cancer was gone.
The next chapter in his treatment involved trying to ensure that it didn’t return. Again, research led Tom and Hannah to a potential solution in the shape of proton beam therapy, where highly targeted radiation is used to treat cells in the area of the brain that have previously touched a tumour.
The idea is that it can ‘kill’ these potentially tainted cells without damaging the hugely sensitive but healthy surrounding tissue.
This cutting-edge treatment made headlines in 2014 when the parents of five-year-old Ashya King, who also had an ependymoma, removed him from hospital in Southampton and fled abroad in order to have proton therapy in Prague in the Czech Republic.
Even now, there are only two NHS proton therapy centres in the UK. After leaving Alder Hey, Tom and Hannah were sent by the NHS to Essen in Germany, where Barney received six weeks of proton beam therapy,
To undergo the treatment, child patients need to be sedated. A side-effect was that after the sedation wore off Barney would barely sleep at night. Unless, they discovered, he happened to be moving around. Tom began taking him on lengthy outings at night, jogging across parks with a running buggy.
When they returned home to the UK he continued, setting out on longer and longer journeys around London’s parks. Last year, they moved to Tiverton in Devon, where pretty soon he was covering 20 and even 30 miles in a single outing.
These runs gave him the idea to raise money for The Brain Tumour Charity by completing a ridiculously long run. I am biased but this is a hugely worthy cause. For though brain tumours kill more children and adults under 40 than any other type of cancer, they still receive only 2 per cent of charitable cancer spend.
So far, Tom and Hannah have raised more than £42,000. They hope eventually to raise enough to fund a dedicated research project focused on ependymomas that may go some way towards helping other families — and children — who suffer from this awful disease.
In November 2020 came the happy day when doctors and nurses at Barney’s treatment clinic in Essen gathered to watch him ring a ceremonial bell denoting he was cancer-free, before walking out of the door for what we hope will be the very last time.
Today, as we approach the second anniversary of his last surgery, Barney is a cheerful, charming, three-year-old with a wicked sense of humour, who will enter reception at his local primary school next autumn. He’s also the proud big brother of a little boy named Dennis, born in February.
Although still overcoming the physical setbacks cancer has caused, he recently re-learned to walk (admittedly he remains a touch wobbly) and gets stronger and sharper every time we meet.
Barney will always live under the shadow of cancer — and will undergo regular brain scans for many years to come. But thanks to Tom and Hannah’s awe-inspiring determination, he has now been given a proper chance at life.
To make a donation to Barney’s appeal, visit justgiving.com/fundraising/hannah-tunstall.