Annabell Robinson, 14, began experiencing headaches and vomiting in June. At first, her parents thought the symptoms were caused by the hot weather or a stomach bug that had already affected her siblings.
On June 15, her mother Leah Robinson, 40, had a phone consultation with a GP, who advised an eye test and less screen time.
The following week, Annabell developed double vision and her right eye began to turn inwards. She was taken to A&E at Kettering General Hospital, where CT and MRI scans found a five-centimetre tumour in the centre of her brain.
Diagnosis and hospital care
Annabell was transferred to Oxford University Hospital for Children, where she had a tissue biopsy and a ventriculoperitoneal (VP) shunt fitted to drain fluid and reduce pressure on her brain.
On July 2, she was diagnosed with diffuse midline glioma (DMG), a rare, aggressive and incurable brain tumour.
The following week, she contracted an E. coli meningitis infection linked to the VP shunt. The shunt was replaced with an external ventricular drain (EVD) to continue reducing fluid build-up and pressure.
Radiotherapy plan
Doctors are waiting for Annabell to recover from a second VP shunt operation and for the infection to clear before she is transferred to University College London Hospital. There, she will receive 30 sessions of targeted radiotherapy every working day for six weeks.
Her father, James MacLeod, 37, an asbestos surveyor from Corby, Northamptonshire, described how quickly events moved. He said: "This is all three weeks, you can see how quickly things progressed. From my perspective, I generally thought it was a bit of hot weather and maybe she needed glasses."
"Leah rang me and I was in the middle of Liverpool and she told me that Annabell had a five-centimetre tumour. Everything just seemed to stop. I fell to the floor and I couldn't believe it. We drove straight from Liverpool to Oxford. And I've been here ever since. It has just happened so fast."
Prognosis and family's decision
The family was told the average prognosis for DMG is nine to 12 months, but they remain hopeful Annabell will respond well to the palliative radiotherapy.
Annabell took three days to wake up from the biopsy surgery and lost the ability to speak normally and move freely. Because she cannot talk, her parents have decided not to tell her the extent of her prognosis until she has been transferred and seen the cancer ward.
James said: "Because she can't talk we don't want to tell her and her not being able to communicate with us about it and sit there and worry and cry or be sad or frightened. Annabell's the kind of person that would protect mine and mum's hearts, even if she wasn’t able to understand."
He added: "We've heard her voice now and she will talk, but not on cue or in front of people. She'll do it when somebody voice notes her on Snapchat, or if I was to ring her phone, she'll answer it and we'll have a conversation. So that's how Annabell was progressing. When she sent me a voice note on Snapchat saying that she loved me, it absolutely broke my heart."
Spreading awareness
Targeted radiotherapy, once the infection has cleared, is described as Annabell's "only chance" of slowing the tumour and easing symptoms.
James explained why surgery was not an option: "The type of tumour it is, it weaves through the cells of the brain, like roots in the soil. And that then makes it really complex to try and remove. But also, because of where it's positioned, if they were to even try to remove that, Annabell wouldn't live. She would, as the doctor said, die on the table."
Before falling ill, James said Annabell was "a very happy, chilled, healthy child". He hopes sharing her story encourages parents to seek medical advice if headaches, vomiting or vision changes persist.
"I just want families and parents to be a little bit more aware," he said. "Take persistent headaches or visions or vomiting a little bit more seriously and push and push. Don't feel like you can be hard off with different reasonings. We just want to try and spread awareness. Annabell is definitely fighting strong. She's definitely a fighter, she hasn't given up yet."
People wishing to support Annabell can donate via her JustGiving page.
