A four-year-old boy from Southport has been told he could have just weeks to live after his rare and incurable brain tumour stopped responding to treatment. Oscar Brown was diagnosed with diffuse midline glioma (DMG) in October last year, after his family noticed changes in his behaviour and mobility.
Oscar, who was previously healthy and happy, became increasingly subdued and struggled to walk and stand. A CT scan at Ormskirk Hospital revealed something concerning on his brain, and he was transferred to Alder Hey Children's Hospital, where an MRI showed a build-up of fluid and pressure on his brain. Doctors fitted a shunt to manage the pressure, but the day after the procedure, the family were told Oscar had DMG, a rare and aggressive brain tumour.
Treatment no longer working
Oscar was given a prognosis of around 12 months. Due to the tumour's location, surgery was not an option, and he began radiotherapy and chemotherapy. But just two weeks ago, a scan showed the tumour had grown significantly and spread towards his cerebellum, the part of the brain that coordinates movement, balance and posture. The family were then told treatment was no longer working and little more could be done.
His grandad, Mark Jopson, 52, told the ECHO: "We noticed a change in him. He was becoming more subdued, he was struggling. He was losing strength on the right side of his body, and he just stopped doing things. He was struggling to walk and stand and he was getting shakes."
Family preparing for end-of-life care
Mark said the family have watched Oscar's condition deteriorate dramatically over the past year. Since treatment is no longer working, they are now looking at end-of-life care. He said: "There's not much else that can be done for him except make him comfortable. It's just heartbreaking. He was a healthy three-year-old, playing, laughing, joking. He's gone from that to barely being able to keep his head up or sit up."
"He's slumped into himself - it's complete opposite ends of the spectrum. I think the hard part is that in the early days he could ask him if he had the headache or he was in pain. Throughout the last three months or so, his speech is gone. We get more groans out of him than anything; the communication side is really hard because he can't tell us. He still uses his left hand a lot and just sort of puts his hand up to his head and rubs his head a little bit. So we know he's in pain."
Despite everything, Mark said Oscar remains a "happy-go-lucky, cheeky little lad". He added: "It's been a terrible journey and a cruel one at that. But the heartbreaking thing is that Oscar is still smiling. Up until about two weeks ago we were getting belly laughs off him."
Fundraiser launched
Oscar's family have launched a fundraiser to help them through the final stages of his journey, including supporting his mum Katie, 24, and his two-year-old sister Willow. Mark said: "She's going through this as a single mum with another child who has just turned two with her own health issues. She's had to leave work to become a full-time carer."
A previous fundraiser helped the family make precious memories with Oscar, including trips to Disneyland Paris, Tenerife and Newquay, as well as visits to Thomas Land, Knowsley Safari Park, Bubble Planet and dinosaur experiences. The family now want to spend the time they have left making Oscar comfortable, surrounding him with love and creating as many special memories as possible, and to give Oscar the best possible send-off when the time comes.
Mark said: "We are aiming to go with a Cars theme, as Oscar's favourite character is Lightening McQueen. Katie has had a little look into things like wrap coffins and things like that and it just goes on and on and on. The expense just goes up. Any money left over will provide a little bit of a safety net for Katie for a couple of weeks after the funeral."
The fundraiser adds: "Any help, support or even guidance in helping us through the next and most difficult part of Oscar's journey will be greatly appreciated. With love and gratitude, thank you in advance. Life can be cruel, unfair and such a struggle at times. Hold your loved ones close and never let them go."
