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When I was a child, I had a sketchy awareness of Great Ormond Street Hospital. I remember its fundraising ads flashing across my television screen, conjuring a mix of unease and relief – unease that some children could be so unwell; selfish relief I wasn’t one of them. This scary-to-me children’s hospital in London felt a world away from my sheltered existence. I never dreamt that one day its corridors would come to feel so familiar.
My second child, Alfie, became a GOSH patient when he was four. We had enjoyed a happy, carefree summer and as September rolled around, my sun-kissed little boy started his first week at school – his uniform too big, his mop of blond hair too long. Three days later, still in that uniform, Alfie was being taken by ambulance to GOSH. He had presented with a couple of mild symptoms that nonetheless rattled my maternal instincts, and an MRI (that I had to fight hard for) revealed a brain tumour the size of a tangerine.
Our world was plunged into darkness. I could hear Alfie chattering to a nurse outside as the junior doctor at our local hospital delivered the blow. “It’s not good news, I’m afraid…” As we waited for the ambulance, something about Alfie in his school tie and shorts, and in particular his old-fashioned little lace-up shoes, made my heart feel like it was being wrung out like a towel.
If that was our darkest and most bewildering hour, GOSH supplied some light, a reassuring rudder of expertise to steady our swirling minds. There was so much that my husband Ed and I didn’t understand. Why couldn’t we go home after the MRI? We assumed Alfie would need surgery, but why did we have to stay in hospital until the operation? Plus there was the fear, shock and sheer horror of the words “brain tumour” sprinting alongside us, threatening to devour us at any moment.
By the time we arrived at GOSH it was Friday night – the comforting hustle and bustle of the working week hushed; the corridors and canteen eerily deserted. All but the on-call doctors and surgeons were now at home, and so most of our questions would have to wait until Monday – a lifetime away.
I’ll never forget the ward sister’s kindness that bleak evening – taking me aside and letting me cry, enveloping me in her embrace. She also made allowances and let us both stay the night (there is a one-parent rule), finding me a bed in an empty room – out of compassion but also, I suspect, because I was heavily pregnant, a ticking time bomb liable to detonate (the nurses felt) under the stress.
I also remember the mother I met in the ward’s playroom that evening. Just a few days ahead of us on this chilling new journey, she and her son James were also awaiting surgery to remove a spinal tumour. As Alfie and James struck up a pyjama-clad friendship, I was able to weep on this stranger who shared our very visceral fear, yet who also offered hope.
From that Friday, Ed and I made an unspoken pact to protect Alfie from our heartache, taking it in turns to shatter to pieces while the other shielded our beloved boy. Somehow we limped through that first weekend, with friends and family rallying round our five-year-old daughter Violet at home as we focused all our energy on Alfie. Early on Monday we met our designated surgeon, Owase Jeelani, GOSH’s speciality lead for the division of neurosurgery, world-renowned for his work separating conjoined twins in 2011, 2019 and, most recently, in January – a man we still call Miracle Hands.
How had we ended up with a world-class surgeon? No strings had been pulled, no special requests made. More than 600 patients arrive at GOSH every day – each referred by a GP or local hospital, each suffering from a rare or complex condition that requires GOSH’s specialist care. How had Alfie become part of this cohort? At this stage, it was simply because we live north of the Thames. We didn’t yet know if Alfie’s tumour was malignant or benign – or if its cause was something common or complex. Jeelani was able to remove it in one go (always his aim, but by no means a foregone conclusion) in one ultra-technical, highly specialised nine-hour operation.
The care Alfie received was extraordinary. Many children have their own ensuite room, with a separate bed for a parent, prompting many of our visitors to comment on the brilliance of our health insurance – no one could believe our room wasn’t a private expense, that Alfie was a patient of the National Health Service. But while the NHS covers the hospital’s running costs, I’ve since learned that it is the hospital’s charity arm that allows it to remain a cut above – philanthropy funds the state-of-the-art theatre where Alfie had his operation; the well-stocked playrooms where we idled away the hours; the play specialist who prepared him for surgery, helping a four-year-old fathom what lay ahead; the Disney-themed play area where Alfie and his sister Violet played hide and seek in a pirate ship. Most importantly, to my mind, the charity also helps to fund the hospital’s pioneering research into new and kinder treatments and cures: it is the largest dedicated funder of paediatric research in the UK and, as a result, GOSH is one of the top three children’s research hospitals in the world. I’m no longer surprised that its annual fundraising target sits around £90m.
Alfie’s GOSH odyssey wasn’t over. His tumour was malignant, and the best course of action was proton beam radiotherapy, a very targeted form of radiation that would cause the least damage to his developing brain. As this treatment was not yet available in the UK, we were sent to America for three months, our secondment – and this is the astonishing thing – organised by GOSH and paid for by the NHS. So Alfie and I decamped to Florida, where my third child was born; Violet stayed at home; and Ed shuttled back and forth across the Atlantic, trying to keep his business and his daughter afloat in London, his son’s treatment on track in America, and to be in the right place when I went into labour (he was).
Over the course of three years, Alfie had two further successful surgeries at GOSH, each performed by Miracle Hands and each, sadly, as a result of a relapse. He also had a second round of radiation in America, this time as part of, and funded by, an American clinical trial, but once again researched and implemented by GOSH. Alfie died this time last year, not long after his seventh birthday.
I often think of the fear I’d feel if he were alive during this crisis, wondering how a child with a compromised immune system would fare as Covid-19 barrels around the world. It’s an anxiety shared by many parents, who – according to GOSH – are waiting longer to seek help for their children for fear of catching the virus.
Like all of us, GOSH has had to adapt in the wake of the pandemic. Its wards have been repurposed. At various points in time, up to 95 members of staff have been seconded elsewhere, and up to seven per cent of staff have been off with the virus themselves, or have been isolating with a member of their household. Tragically, inevitably, a small number have died.
The charity has been agile, launching an emergency Covid-19 appeal within three days of the UK’s lockdown and raising £1.5m so far to fund childcare for staff, new toys for patients in isolation, specialist staff training, social-distancing tools – including baby monitors to allow for communication between wards – and three research projects, two of which focus on mental health and wellbeing in the context of Covid-19 and a third looking at the immune response to the virus. GOSH has also received financial support from NHS Charities Together, which has raised £100m through its own Covid drives. With most key fundraisers cancelled, including the London marathon, and no events likely to take place for the rest of the year, the GOSH charity is changing its focus to digital fundraising. In May it hosted its first ever virtual gala, “At Home With GOSH”, an evening of entertainment for more than 300 guests that raised £36,000. But it won’t be enough to redress the £25m shortfall for this financial year, says the charity’s CEO Louise Parkes.
I am so grateful to GOSH. Although Alfie had to endure three surgeries, two rounds of radiation and umpteen outpatient appointments – physio, endocrinology, sight and hearing tests – he suffered very little, physically or emotionally. We protected him fiercely, yes, but it was also thanks to his care. He bounced back from gruelling operations within days and took treatment like a warrior. The rest of the time he lived an excellent life, the perfect mix of happy and normal, going to school, on holiday and everything else in between.
Alfie’s third surgery was a palliative one – a testament, I believe, to GOSH’s dedication. The writing was on the wall, but they were prepared to buy us more time. Having had as much radiation as a child can withstand, the dreaded tumours returned three months later and we started oral chemotherapy to buy us just a fraction longer. It worked brilliantly, and that summer you would never have known our little boy’s fate had already been sealed, that death was waiting in the wings. He holidayed with cousins and friends like any other, as Ed and I looked on in wondrous disbelief.
GOSH told us to expect a slow decline and we were given a toolbox of palliative medicines to ease symptoms at every step. In the end, though, as summer drew its final breaths, Alfie’s candle was snuffed out in a matter of hours – we think after something ruptured in his brain. A sixth sense meant I had called Ed home from a business trip the night before, and we were both with him when he died.
Our grief is still raw, our loss too big ever to overcome. I know only too well the pain and sorrow Ed and I feel every day, but seeing our other two children navigating these waters is often worse. Violet has lost her wingman: born 15 months apart, she and Alfie grew together like tree roots; she can’t remember life before him, but she is agonisingly aware of her new existence without him. Kit, now aged three, has lost the big brother he so yearns to play trains and chatter PAW Patrol with.
Like so many parents before us, all we can do is create a legacy. GOSH has 678 active funds set up by families of current and former patients, many of which have reached six figures. We will endeavour do the same – to help GOSH go on, into recovery from Covid-19 and beyond, and to help us go on too, without Alfie by our side.
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