14 February 2020
This Childhood Cancer Day (15 February), DKMS remembers Oliver Brown, who died at the age of 11 after bravely battling a rare blood cancer – and are making an urgent plea for more people to sign up to the blood stem cell register to help give other children like him a second chance at life.
Oliver, from Plymouth, was diagnosed with Myelodysplastic Syndrome in 2016, and spent the next three years facing intense and invasive treatment, which included time in isolation and two five-month stints in Bristol Children’s Hospital.
Oliver’s parents, Nicky and Mike, first noticed something was wrong back in August 2016, when Oliver, then 8, was getting more tired than usual. They noticed unexplained bruising on his legs, which was then followed by a chest infection. After blood tests, doctors confirmed the devastating diagnosis, which affects just four children in every million.
Oliver needed a blood stem cell transplant, and when no suitable match was found within the family, his doctors turned to the UK’s stem cell registry to find a donor with a close genetic match to Oliver. A matching donor was identified, and Oliver’s blood stem cell transplant took place in January 2017, after which he faced a period of seven weeks in isolation at Bristol Children’s Hospital, 120 miles away from their Plymouth home.
The blood stem cell transplant seemed to be successful, but a year later, Nicky and Mike noticed Oliver was getting tired and emotional, with big bruises re-appearing on his arms and legs again, and bleeding gums. Doctors confirmed that Oliver’s myelodysplasia had returned.
The disease was advancing quickly, so it was decided that Oliver would undergo a second blood stem cell transplant. Again the treatment appeared to be successful and, after months of hospitalisation in Bristol, Oliver returned to Plymouth to continue his recovery with his family.
Unfortunately, Oliver relapsed again in May 2019, and the family were told there was nothing more doctors could do. It was predicted that Oliver would have only weeks to live.
Nicky and Mike, along with Oliver’s younger brother Benjamin, made the commitment 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.
Their experiences included visits to Legoland, Harry Potter Studios, deer spotting at Bovey Castle, zip line at the Eden Project, hosting his own radio show, presenting the news during a tour of local BBC studios, and a helicopter ride – as well as spending a day on the beat with Devon & Cornwall Police, a particular highlight for Oliver who had always wanted to be a policeman.
And testament to Oliver’s determination, he defied the odds and continued fighting, living life to the fullest for another five months.
Nicky said: “Whatever Oliver faced in life he did with a smile on his face and love in his heart. There was more laughter than tears in the last three years and we want to remember Oliver like that.”
“Throughout his short 11 years he faced and experienced more than most adults do in a lifetime. His ready smile, sheer determination and love of bright colours (especially pink) allowed him to live every day to the fullest.”
Family friend Helen Copson, who has been friends with Mike since school, offered support to the family, and helped raise awareness of Oliver’s condition through her popular blog, www.twinstantrumsandcoldcoffee.com.
Helen said: “My dear, dear friends were being told their 11 year old son’s rare cancer was back and that there was no treatment to help him. I will always remember reading that text at my boys’ bedtime. The news was heartbreaking”.
Last Autumn, knowing the end was near, Oliver’s family celebrated Christmas two months early as they knew he wouldn’t make it to December.
Dad Mike said: "Oliver had a real love of Christmas, he adored it and we knew that he wouldn't be here to see it. We wanted to make that happen so he could experience Christmas one last time together.”
After enjoying their Christmas, the family said their goodbyes to Oliver as he passed away at Little Harbour Children's Hospice a week later.
Nicky said: “Throughout his short 11 years, Oliver experienced more than most adults do in a lifetime. He was born deaf and his whole life has revolved around hospitals. But he faced it 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.”
Another family friend, Noah Kelly, wrote a song in memory of Oliver, and this Childhood Cancer Day, the family hope that Oliver’s story will inspire more people to sign up as potential blood stem cell donors with DKMS.
Jonathan Pearce, CEO of DKMS UK said: “Oliver was an extremely brave boy, and the way he dealt with his condition with such positivity is truly inspirational. Ultimately, Oliver’s condition was just too difficult for him to beat – but for many people, a blood stem cell transplant can be the lifeline that they so urgently need.”
“DKMS is dedicated to the fight against blood cancer, and we hope that Oliver’s story will inspire more people to sign up with DKMS to help more people, like Oliver, as we strive towards our vision of providing a matching blood stem cell donor for everyone who needs one.” “In the UK, we have now signed up more than 600,000 potential lifesavers, and helped to give over 1000 people a second chance at life. But we need more”.
How you can help
If you’d like to register as a potential blood stem cell donor you can check your eligibility and request a home swab kit today.
Anyone aged between 17-55 and in general good health can go on standby as a potential lifesaver. If you're not eligible or you're already registered, why not check the other ways to get involved in the fight against blood cancer or help us cover donor registration costs?