This is the blogpost I never wanted to write. A post saying that 11 year old Oliver Brown, the son of two of my best friends, has died.
It’s every parents’ absolute worst nightmare. I can’t think of anything more terrible. And my dear friends Nicky and Mike Brown, along with their 8 year old son Benjamin are going through it right now.
But they want Oliver to be remembered for the inspiring, brave, amazing boy that he was, so wanted me to post this. They want people to talk about him and share stories and say he loved being the centre of attention – so I’ve used as many pictures of him as I possibly could!
You may have read my other post about Oliver. He had a rare form of blood cancer, which affected only four in one million children worldwide, and has been receiving treatment for it for the last three years.
He passed away peacefully at Little Harbour, a children’s hospice in Cornwall last night (November 2). His mum, dad and brother were beside him.
As much as we all knew it was coming, and I’ve been in daily contact with Mike – or Brownie as he’s been known since we were at school together, it was still so, so sad receiving that message.
A tribute to Oliver
So here’s what I hope is a perfect tribute to Oliver, from his amazing parents.
Mike said: “He fought so hard but this was just one fight too many. Inspiring so many, we are so incredibly proud of both Oliver and Benjamin and everything they have achieved.
“Benjamin recently described Oliver as being humorous, kind and a Sir Prank-a-Lot, qualities that Benjamin will certainly continue to carry through life.”
Nicky said: “He was adored by anyone who ever met him, he was unique. They broke the mould when they gave us Oliver. He was loving, cheeky, compassionate, brave, and was really contented with who he was as an individual. He had a real zest for life.”
Oliver was diagnosed with Myelodsplastic Syndrome at Bristol Children’s Hospital towards the end of 2016, which he had developed as a result of a complicated genetic disorder relating to his GATA2 gene that also led to him being born deaf. We were all so shocked. But everyone was so positive he’d get through it.
The Plymouth school boy spent the last three years facing intense and invasive treatment, over 15 operations, time in isolation and two 5.5 month stints in Bristol Children’s Hospital.
In May, the family were told there was nothing more doctors could do, and that he would only have weeks to live. Nobody could believe it.
But true to his personality, Oliver amazingly defied the odds and continued battling, and living life to the fullest he could for another five months.
Mike said: “He was born with a natural ability to make people warm to him. People smiled when they saw him and when they left him they wouldn’t forget him.
“The things that set him above anyone else was his sense of humour and his compassion – his ability to deal with stuff. He could go back to a place and people would remember him. He had a very memorable personality.”
After the initial diagnosis, the family were told Oliver needed a stem cell transplant. Benjamin was not a match so a donor was found and the procedure went ahead in January 2017 following intense chemotherapy. He was then in isolation for seven weeks in Bristol with only four named people allowed into his room – that didn’t include Benjamin as he was too young.
Nicky stayed with him all week, then Mike and Benjamin did the 2.5 hour journey every Friday from Plymouth. The brothers would talk through the window via walkie talkies, and Mike would then stay with Oliver whilst Nicky spent the weekend in Bristol with Benjamin, staying in CLIC Sargent accommodation called Sam’s House.
We went to visit them in Sam’s House and Oliver couldn’t wait to show us around. It was an incredible place.
After 5.5 months of treatment, Oliver and Nicky returned to Plymouth in May 2017. He was taught at home until the October half term after which he went back to his beloved friends at school. They had kept in touch whilst he was away by Skyping his hospital room.
Just before Easter 2018, Nicky and Mike noticed Oliver was becoming tired more easily again, and after further tests the family were given the news they’d been dreading. The Myelodysplasia was back.
A second transplant was arranged, this time using stem cells taken from a donated umbilical cord, but the cancer was advancing faster than previously and another bone marrow biopsy brought the horrendous news that Oliver had borderline acute myeloid leukaemia, and it was unknown whether a second transplant was advisable. It was decided Oliver would have even more chemotherapy and the second transplant eventually went ahead in August 2018. He was hospitalised for a further few months, not returning to Plymouth until November.
He had his feeding tube and Hickman line used to give him medication removed in April 2019, but developed shingles within a month and was back in hospital. Just 10 days later on May 23, 2019, the family were told the devastating news – the second transplant hadn’t worked, the Myelodysplasia was back, and there was nothing more doctors could do. It was the worst text I’ve ever read, but as always Nicky and Brownie were so brave and positive.
‘Exceptional and compassionate’ NHS
Nicky said: “He has undergone so much, far more than any adult would expect to go through in their entire life. He was born deaf and his whole life has revolved around hospitals. We cannot sing the praises of the NHS enough. Everyone who has been involved in Oliver’s treatment, particularly over the last 3 years, has been exceptional. The levels of care, compassion and support for not just Oliver, but us as a family, has made this so much easier to live through.”
Since May, Oliver had more chemotherapy to slow the development of the blast cells within his blood, and lots of blood and platelet transfusions, but the cancer spread.
So the family decided to have as much fun as possible with Oliver whilst he was well enough – to give him amazing experiences, and to provide Benjamin with memories of his brother that would last a lifetime.
All about having fun
Charities and generous local people who heard about Oliver rallied round, and the family spent the last few months making the most of their time together. Experiences included a treehouse at Center Parcs, visits to Legoland, Longleat, Harry Potter Studios, deer spotting at Bovey Castle, a trip on a luxury Princess Yachts vessel, doing the zip line at the Eden Project, hosting his own radio show, presenting the news during a tour of local BBC studios and completing a young driver’s experience.
He was taken for a ride in a helicopter, took part in a mass motorcycle ride, and a Volkswagen ‘cruise’, as well as meeting the Devon Air Ambulance team, going out on the RNLI lifeboat, being a fireman for the day, spending time on his Year 6 school residential, and meeting players and the coach at an Exeter Chiefs rugby match.
Seeing pictures and hearing updates of all the fun they were having was fabulous!
But best of all, according to Mike, was when the family spent the day with Devon and Cornwall Police, because Oliver had always wanted to be a policeman.
Mike said: “The biggest highlight was the day we spent with Devon and Cornwall Police. We knew how much it meant to both boys. It was the unexpected nature of it. It went from a look around a police car to a remarkable day hosted by genuine people, it was just amazing.”
“It’s been remarkable the amount of people that have offered what they can as a gesture of kindness. It’s given Oliver some exciting moments, and given Benjamin memories for life.”
And one of Oliver’s favourite places to return to each time he got out of hospital was Plymouth’s West Hoe Park – where he became friends with Jan and Shelley who run it and would help them out on the Gus Honeybun train, the bouncy castle or the kiosk.
Oliver loved helping others
Mike said: “He always wanted to help others, he just loved it. And he loved West Hoe Park. It was his go-to place during the last three years.
He added: “Oliver took the last three years in his stride. He absorbed it all and made it easy for everyone else around him. If someone asked him how he was, he would always say he was fine, despite talking with us about how tough he was finding it.”
Nicky said Oliver was a thrillseeker and some of the experiences the family had since being told he didn’t have long to live have been incredible.
She said: “He was such a thrillseeker. He was the one that got me on the high ropes at Center Parcs and the zip wire at Eden. I would never have done any of it. But the fact I did it with him was a really special moment.”
Zest for life
“He had a real zest for life. We have done things because of him that we would never have had the opportunity to do. He was always up for trying new things and was the first to volunteer for something.”
Nicky said Oliver also had a real sense of fairness and equality – choosing to support one side during the first half of a rugby match, then the other team during the second half, to keep things fair.
She said: “His sense of fairness and equality played a big part in everyday life. He would always make sure games were played by the rules. He was a stickler for the rulebook. He would always want to be the referee in any games as he was somewhat clumsy when it came to sport!”
Oliver was interested in current affairs and would watch BBC Breakfast News every day – once writing a list of things he wanted to see happen in the world including Donald Trump banning guns, more NHS beds, and litter patrols on beaches.
He was voted to be an ‘eco warrior’ at school, meaning he had to attend meetings and put forward ideas on how the school could improve and be more environmentally friendly.
Nicky said: “He was very much like his Dad – very happy to have a laugh and a joke but cared deeply about things that matter and things that affect other people. From a really young age he was really empathetic.
Oliver was “unique and very contented”
“He was very true to himself, he didn’t follow trends, he was never influenced by anybody else. He was unique and very contented.”
“He had a real willingness to smile and engage with people, and that set him apart from anyone else.
Nicola added: “He pushed the boundaries in a comedic, jokey, cheeky way as a young child, which was one of the main reasons that he was able to work his way into the hearts of everyone he met.”
Proof of their fun-loving spirit was there for all to see last week, when the family put up their Christmas decorations two months early because they knew Oliver wouldn’t be here to experience it in December.
And when I say decorations, I mean LOADS of decorations. Walking into their house last week was brilliant. (Apart from the creepy life-sized singing Santa they’ve got stood by their tree!)
They have lights across the front of their house, illuminated snowmen in the garden, a Christmas tree up, decorations everywhere, and a Lego Winter Village complete with moving train. It’s just perfect.
Mike said: “Oliver had a real love of Christmas, hence why we did it. He genuinely adored Christmas and we knew that he wouldn’t be here this year to experience it. And really, what the hell does it matter how early it all goes up.
“One of Benjamin’s wishes was that Oliver was here for Christmas and that if he couldn’t be, he wanted him here to put up the decorations. We wanted to make that happen so he could experience Christmas one last time together.”
Raising money in Oliver’s memory
In September Mike and five of his friends, including my Other Half, took part in the One Pedal At A Time cycle challenge from Land’s End to Bristol to raise money for the Wallace and Gromit Grand Appeal which supports Bristol Children’s Hospital. They raised a staggering £16,500.
Mike and Nicky have set up another fundraising page now, to raise money for Children’s Hospice South West’s Little Harbour, who have supported them so much.
If anyone wants to donate, they can do so here.
Oliver’s funeral will be private but the family are planning to arrange a Celebration of Life service at a later date for everyone to attend.
Nicky said: “Whatever Oliver has faced in life he has done with a smile on his face and love in his heart. There has been more laughter than tears in the last three years and we want to remember Oliver like that.”
I know Oliver will be remembered for the fun-loving, unique, caring prankster that he was. And I know Nicky, Brownie and Benjamin – Team Brown as they’ve become affectionately known – will get through this and ensure his memory lives on.
They are a force to be reckoned with, one of the most tight-knit and inspiring families you could ever imagine. And I couldn’t be more proud to call them my dear friends.
How did I do?
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