When our son Noah was diagnosed with terminal bowel cancer he was just 17 and it was the height of the Covid-19 pandemic. Only one parent at a time had been allowed to stay in hospital with him at this point, but now St James’s Hospital in Leeds called in both of us – Steve and Julie – to sit with Noah while they gently told us he had no more than a couple of years of life left to live.

It was spring 2021 and for a year we had all struggled to negotiate the maze of online consulting systems, GPs, and then our local hospital to find out what was wrong with Noah. When his consultant discovered he had cancer that had spread to his liver it was too late to save him.

Our family – Steve, Julie, Noah and his older sister Kizzy – freefell into a dark pit of grief. Somewhere above us, though, a tiny light kept burning: Ward 94 at St James’s, the Teenage Cancer Trust Ward.

Wholly funded by the Teenage Cancer Trust charity, Ward 94 exists within the normal hospital at St James’s, but inside that ward everything is just a bit brighter than usual, and makes life for desperate families a bit easier to face.

Noah had an amazing medical team supporting him, led by his consultant Dr Jenny Seligmann. He had Robyn, his own specialist nurse to care for him and advise us. He had Toni, his own social worker, to help us navigate the sudden avalanche of paperwork. Joe, his learning mentor, communicated with his college and with our daughter’s university to explain the bomb that had gone off in our family – and played hours of Pokémon with Noah while talking life and death. The sheer lifeforce that was Padma, Noah’s youth support co-ordinator, made him smile just by popping her head around the door, and on Thursdays she brought him pizza. The family room had a jukebox, snacks, comfy chairs – for the first time in many months I watched Noah playing a guitar again. All these things might seem inconsequential when life is easy and children are healthy, but I cannot properly describe how much comfort they brought us in the depths of our despair.

Noah died in August 2022, just 16 months after his initial diagnosis. He faced death with enormous sweetness and bravery. Throughout his illness we had the incredible support of Ward 94 and the Teenage Cancer Trust, all of whose income comes via charitable donations. Most people have no idea that a ward within an ordinary NHS hospital can be funded by a charity. We had no idea ourselves before this happened. So we want to tell people about that, and we very much want Ward 94 to continue its wonderful work. That’s why we are raising money and awareness to help other teenagers and their families through the darkest time of their lives, so that the beacon that is Ward 94 keeps shining.

If you'd like to find out more about the force of life who was our son Noah, you can find out more about his life and his story below.

Noah Brown, born April 23, 2003, died August 8, 2022

All donations will be restricted and utilised at the Teenage Cancer Trust unit where Noah was treated and supported - Ward J94 St James's Hospital in Leeds.

We are supporting other teenagers and young adults diagnosed with cancer who need the expertise, care and support that they deserve.

Teenage Cancer Trust is the only charity who do what they do. We hope you will help support our fundraising as well as creating more awareness of their work.

Thank you

For more information www.teenagecancertrust.org

About Noah.

This is an extract from the eulogy Julie wrote for Noah's funeral.

The most important thing to know about Noah is that he was a person of passions – he couldn’t love anything half-heartedly. From the time he was a baby he was consumed by his various interests – (some would say obsessions!). In the grip of an obsession, he had to KNOW everything about it and often tried to BUY everything to do with it. We tried to make a list of them in chronological order, and it went something like this:

diggers, fire engines, Fireman Sam, golf, Lego, Ben 10, BeastQuest, Hexbugs, Bakugan, Airfix models, Pokemon, Mario, Star Wars, Assassin’s Creed, Magic the Gathering, Dungeons and Dragons, Graffiti art, guitars, music tech – and then, when he was very ill, it was back to the consuming obsessions of his childhood, Pokemon and Lego. In the last six months of his life he assembled a Lego collection that could have stocked a small shop!

He was clearly fascinated by music from an early age. Seconds after he was born he was laid on my chest crying, and I said, ‘Hello, Noah!’ He immediately stopped crying, looked up at me and listened. He heard my voice and suddenly there was a sound in the world he recognised. Whenever we were in the car with him as a baby we’d listen to music, and if it stopped for a moment - most memorably the pause of a couple of seconds in the middle of the Scissor Sisters song Laura - he would burst into tears until it started again.

He had a go at playing piano, oboe, flute, and when he was 11 he auditioned for the Bradford Cathedral Choir. I’ll never forget the organist saying, ‘And can you sing this note? And this note? And THIS note’? Going higher and higher, and the look of excitement that passed between the organist and the director of music. By the time his voice broke he was singing solos for Bradford Cathedral.

The way Noah achieved things almost made him seem as though he could do magic. It was never obvious when he was learning anything - one minute he couldn’t read at all, and then the next he could read fluently – though I was watching closely I never saw where the crossover came. The same thing happened when he learned to play the guitar -the last and most successful of his instruments - one day he was stumbling along trying to move between chords, the next he was playing along to Tim Henson guitar solos - I never saw the join, and he made it look effortless.

He was incredibly, fiercely modest. He genuinely never believed he was any good at anything much, though he could draw beautifully, sing beautifully, won all the school shooting competitions, instinctively played an elegant game of golf. The thing he most underestimated about himself, though, was his own kindness and emotional wisdom. He was always, in some ways, older than his years. I remember when he was at nursery he won over every adult he met because he always asked them how they were, and chatted to them – as one of his nursery teachers put it to me – ‘like an old man leaning on a gate to have a chinwag’. And Noah was charm itself. He had both his parents, particularly me, wound around his little finger when it came to helping him achieve whatever scheme it was he had going at the time. His combination of relentless, logical argument and winning cheekiness meant that I gave in to whatever it was he wanted 90% of the time. The 10% I didn’t give in to he would thank me for, telling me what a good parent I was. It was an unbeatable charm offensive and I could only take my hat off to him.

When people have been telling me funny stories about Noah they have so often centred on his astonishing talent to make money from any situation. Alisa reminded me the other day that, at a school fair, when Noah was about five, he came up to her where she was manning a toy stall, clutching a dozen 2p pieces. ‘Can I swap these for one of those?’ he asked, pointing to the pound coins. Later, foiled by Alisa’s ability to do basic maths, he was trying to hawk around a toy he’d bought for 50p, now marked up by him to £2.50. On a family holiday to the Hebrides when Noah was about 10, he and Steve caught loads of fish for us to cook on the beach – far too much fish. At some point while I was fanning the barbecue flames Noah disappeared, only to reappear an hour later with an extra £25 in his pocket. He’d been up and down the beach selling the extra catch to charmed tourists.

He always lamented his lack of friends – he found it hard to make connections with people, and hard to deal with the rough-and-tumble of everyday children’s friendships. In primary school, though, he had one steadfast friend, Corben, and in secondary school there was Seb, who meant everything to him during a very difficult time of his life. Noah found academic learning very tough, and Seb, at the other end of the scale, was very very good at it. But Seb stuck with Noah, and the two formed an unbeatable friendship. Even when their school told Noah they didn’t want him in the sixth form because he hadn’t done well enough in his exams, Seb stuck to him like glue, and that meant the world to Noah.

As is so often the case in this kind of situation, though, it turned out that Noah leaving his school was the best thing that could ever have happened to him. Instead, he instantly got a place at Leeds College, where he studied music tech in their brand new department, packed with all the latest equipment. He loved Leeds College from Day One. Suddenly he was doing something where he shone, and, far more importantly, he landed into a group of fellow students who formed a tight gang around him - and, in various ways, that gang looked after him until the end of his life. His beautiful friend Fraser organised them all to turn up to St James’s Hospital when Noah was first on the ward having chemo, and handed over the biggest carrier bag of sweets you can imagine. Noah laid them all out on his bed and counted them. It ran into the hundreds. When Noah was out of hospital Fraser organised a trip for him to visit Abbey Road Studios in London, not normally open to the public, so that Noah could see the holy musical ground of his idols The Beatles. There was an extra-special treat in that recording there that day was an orchestra playing through the score for the lastest Star Wars movie. And in the last year of his life Fraser and the whole gang paid visit after visit to Robin Hood’s Bay where they mostly just hung out with Noah in the shed and made him feel for a little while as though his life was cruising along as normal.

Over the last two years he had to deal with disappointment upon disappointment. The thing he wanted more than anything out of life was to have a family, and he had to accept that that would never happen. He dreamed of having his own commercial recording studio, and meanwhile he built his own studio at home - and his work mixing and mastering - and often playing guitar as well - was really good! He mastered work for several musicians, played bass with Nick Baxter’s band Sunbeam, added an excellent guitar solo to a track by Ben, Harry and Ed’s band Don’t Watch the The News, played at a couple of local gigs and even performed live on local radio. He was on the verge of breaking away, becoming independent, having his own life. After a 3-HOUR interview which he dealt with competently from his hospital bed at St James’s in Leeds, he was offered the university place of his dreams at LIPA - the Liverpool Institute of the Performing Arts - on their music tech programme. None of those interviewers would have realised how ill he was at the time (though he was clearly in a hospital bed), and, in typical Noah style, he declined to tell them. Being unable to take up that place was another bitter disappointment, yet he was still genuinely happy for his friends who were able to move on in their lives and take up similar places.

He fought unfailingly against all the restrictions and limitations of his illness. Having to be dragged back into a childhood that he had been moving away from at speed, he still maintained a grace in everything he did that was inspiring, beautiful and very moving to witness. And his unending naughtiness, together with the ability to exploit every situation to the max, was also there right up until the end. I will never forget our weeks in St James’s, which Noah treated as free luxury city breaks. On one of his last visits he somehow managed to walk all the way into the centre of Leeds to get to the Lego shop – and back again! And often he’d be in for chemotherapy, and, while I waited for him on the ward, he would sling his syringe driver over his shoulder and head off out into the bright lights of Leeds. One week he was out four evenings in a row – two concerts and two nights out drinking with his friends in a graveyard. One night, a bit the worse for wear, he accidentally smashed his syringe driver when he slammed it in the door of a taxi. At one point Kizzy came to stay too, and I had to endure the mixed feelings of listening to the two of them come rolling in around midnight, giggling their way up the ward corridor, wondering if I was the only mother whose children were using St James’s as a departure point for their nights on the tiles.

Noah organised most of the details of his funeral, and he asked to be cremated with two things in his jacket pocket: a Lego stormtrooper and the key to our house. To me one symbolises the childhood he was leaving behind and one the independence he had longed for for so long.

He was very sad that his life wasn’t longer – sometimes he told me he thought he’d wasted it – but looking at all the things he achieved, all the kindnesses he did others, everything he meant to so many people, it’s astonishing how much he achieved. Without going into details I know there are people who feel they owe Noah their lives, and I couldn’t be prouder of my boy.

In the few days before he died we sat around his bed and remembered some of the wonderful things he had done, and that we have done as a family. He could no longer talk or even see properly at this point but we could tell he heard and understood.

These are some of those memories:

• Camping in Hushinish in the Hebrides, when he insisted on carrying a log around with him all day wherever we went

• swimming in an idyllic pool at a hotel in the western fjords of Iceland with a baby Arctic fox in the garden and a parrot in the dining room

• visiting the dinosaur park every summer when we went to stay with Grandma in Norfolk

• spray painting an abandoned mill in Hebden Bridge with Joe

• standing astonished in Times Square, New York at midnight with Kizzy, out on their own in the world’s most exciting city

• picking his border collie pup Indi in a shed on a sheep farm in County Durham

• bunking off school with me to see our idol John Finnemore trying out his show on stage in London

• putting the final piece into the ultimate Lego model, the seven and a half thousand piece Millennium Falcon, just a few weeks ago – something he had charmed his grandmother into buying for him.

Kizzy has asked me to add in some memories of her own:

“When I was in my last year at uni he’d videocall at night and we’d watch The Midnight Gospel and Rick and Morty together on Netflix. We used to go out of our way to watch the worst possible films together, and he gave me a lecture on how The Holiday must have been written by a man because it was so sexist!

We spent the whole first lockdown playing Mario Cart together and even though he was on a huge amount of drugs that meant he couldn’t use his hands properly I still only managed to beat him once

When he came to stay with me in Manchester for the first time we got on like adults - I’m really sad we didn’t get to be adults together for very long. And he made that long trip just to see me when he was really ill – twice.

Noah was witty and funny and kind and caring. And he was a great person to test all my recipes on because he always wanted to try something different. The last thing I ever made for him was chocolate brownies.

In summer we loved sitting on the pontoon at Ponden, just lying together listening to music, looking at the sky, getting eaten by midges.

But my favourite memory is sitting together on his bench in Robin Hood’s Bay, looking at the stars and talking about things that were deeper than we’d ever spoken about before – things like him dying - talking into the freezing December darkness”

Noah remained unfailingly grateful and polite to everyone who helped him. And – and this is where the person he would have been had he lived came through so clearly - he dealt with his oncoming death with enormous courage and very touching dignity. He told us it was OK to cry because he was the best person to comfort us. He comforted us. And over and over again he told us, ‘Remember - I’m here NOW and that’s enough.’ I will try to remember that and live by it every day.

It was an honour to look after Noah as his life came to an end. It was an honour that Steve and I were there at the beginning and we were there at the end. Of course I long for more of him but we had 19 amazing years, and Steve, Kizzy and I could not be prouder of him or love him more. More than anything we should be celebrating Noah and being joyful for who he was and for having had him in our lives.

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