A mum who lost her beloved son to a diffuse midline glioma (also known as DIPG) is sharing her family’s story to raise vital awareness.
Michelle Doe’s beloved son Callum was 13 when he first started suffering with headaches, vomiting and double vision. Initially his symptoms were put down to a tummy bug, until he had a seizure.
When a scan revealed a brain tumour, Michelle said: “It was terrifying because I’d lost an uncle to a brain tumour a couple of years previously. I remember feeling completely numb.”
After surgery, Michelle and husband Ian were told that Callum might live a couple of years, but not 10.
Callum had radiotherapy and the family, which also included his older sister Abigail, focused on making memories and enjoying holidays and days out.
When Callum started having further symptoms, he underwent more radiotherapy until he and his family decided that quality of life was more important than quantity.
Callum celebrated his 15th birthday in July 2020, but just a week later he had a big seizure from which he never really recovered. He died 20 months after his diagnosis with his parents at his side.
Michelle said: “The treatment for childhood brain tumours is barbaric and too often ineffective. Nothing has really changed since Neil Armstrong’s daughter Karen died aged two and a half from a DIPG in 1962 and the treatment then was radiotherapy.”
Our Centre of Excellence at The Institute of Cancer Research (ICR), London, is focusing on identifying new treatments for paediatric-type diffuse high-grade glioma brain tumours in children and young adults like the one that killed Callum. It is working to bring us closer to the day when such brain tumours are no longer a death-sentence, devastating families.