A North Devon dad has spoken about his determination to spend as much time as possible with his young family after being diagnosed with an aggressive brain tumour.
Elliot Macdonald, 35, from Swimbridge, was diagnosed with stage four glioblastoma earlier this year after struggling to write and use his hand while working as a tiler.
The father of two said the past few weeks have been a whirlwind as he and his family come to terms with the diagnosis.
He said: “I’ve cried more days than not, partly because I’m scared of the unknown, but mostly because of what I might miss.
“My family are my whole world. My wife Erica, our daughter Aluna and our little boy Ocie mean everything to me. I want to watch Aluna continue to grow into the kindest, most beautiful soul. I want to see Ocie ride his first pedal bike and watch him grow into the cheeky little lad we’re already starting to see. Most of all, I just want to be here.”
Elliot said he noticed something was wrong after a day at work at the end of May.
He said: “I was taking longer to do the jobs. Then I came home and tried to write my name on a piece of paper. I wrote it down and it didn’t look right.”
Elliot was told by doctors that his symptoms could be repetitive strain or linked to a vitamin B12 deficiency. As his symptoms continued, Elliot returned to hospital for a CT scan.
(Image: Supplied)
“The doctor asked whether I wanted my family with me or whether I wanted to have the conversation on my own.
“I just wanted to hear it for myself first. He said ‘we’ve found a mass on your brain.’ Hearing that the diagnosis comes with an average life expectancy of just 12–18 months, even with radiotherapy and chemotherapy, is something no person or family is ever prepared for.“
An MRI scan followed before Elliot underwent open brain surgery, where surgeons removed as much of the tumour as they safely could while monitoring his speech and movement throughout the operation.
Following surgery, Elliot experienced seizures caused by a bleed on the brain and returned to theatre for a second operation.
“It all happened really quickly. I don’t feel like I’ve had time to stop.”
Elliot underwent open brain surgery(Image: Supplied)
As he undertakes treatment in Exeter, Elliot says one of the hardest parts has been explaining the diagnosis to his five-year-old daughter.
“Our little boy Ocie is only one so he doesn’t understand, but Aluna is beginning to realise what’s happening.
“A few days ago she had a cry with Erica and said ‘I don’t want daddy to die’. I told her ‘we’ll fight this together, don’t worry.’ Hearing your little girl say that is really difficult.”
Elliot said his sister Lauren, who was successfully treated for stage three melanoma after being given a prognosis of three months, has been a source of support throughout his diagnosis.
“She’s my sidekick and she’s been through a similar journey herself and understands the emotions. Hearing her story gives me hope.”
The family have received support far and wide(Image: Supplied)
Alongside chemotherapy and radiotherapy through the NHS, Elliot and his family have been researching additional treatment options offered by specialist clinics overseas.
They are currently speaking to experts about personalised cancer vaccines in Germany which are created either through analysis of a person’s blood or the tumour sample itself.
They also offer immunotherapy, which harnesses the body’s immune system to prevent and control the cancer with costs ranging from £80,000.
“We’ve done a lot of research over the last five weeks. You finish one phone call and then you’re speaking to another clinic or another family. It’s become part of everyday life.”
His fundraising campaign has raised more than £160,000, while the family have also received support from people across North Devon.
“We’ve had people offering lifts to hospitals, meals, food parcels, help finishing one of the rooms in our house and all sorts of other things. The support has been incredible.”
Elliot said hearing from other people living with glioblastoma has helped him focus on the future.
“You hear statistics, but you also hear from other people who are three years, five years or even ten years down the line. Hearing those stories gives you hope.
Elliot, Erica, Ocie, and Aluna(Image: Supplied)
“I’m not ready to accept that my story is over. I want to explore every option available to me and spend as much time with my family as I can.”
To donate to Elliot’s treatment, visit his GoFundMe page here.