In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Phoebe Lowe had been suffering with sickness, balance problems and a head tilt for months before being diagnosed with a pilocytic astrocytoma in June 2017. She was just four years old and required emergency surgery to treat a build-up of excess brain fluid. She underwent a debulking surgery just days later. Following regrowth Phoebe, from West Malling in Kent, had another operation in May 2021 after which she suffered sight and bladder problems. Now nine, she is being monitored with annual scans.
Here is Phoebe’s story, as told by her dad Peter …
Phoebe is one of a kind. My wife, Katherine, and I consider her our hero because she’s so very brave. She even counsels us at times, telling us she’s fine and we needn’t worry.
She’d just turned four when she was diagnosed with a pilocytic astrocytoma in June 2017.
“For months before that, she was being sick in the mornings, struggling with her balance and tilting her head to one side.”
I’m a road surfacing foreman and I work a lot of weekends. Katherine would ring to tell me Phoebe had been sick again. She had taken her to the doctor only to be told Phoebe was dehydrated and her head tilt was being caused by a pulled muscle.
“None of it was adding up.”
One Saturday, when we were meant to be going away for the weekend, I saw how bad Phoebe was with my own eyes. I took her straight to Tunbridge Wells Hospital in Pembury and had a moan because they were reluctant to look at her. I’m glad I did too, because they did a CT scan and blue-lighted us straight to King’s College Hospital, London, for surgery.
“It turns out Phoebe was just 48 hours away from a very serious life-threatening situation.”
She had developed hydrocephalus as a result of her tumour’s position on her cerebellum and brain stem. She needed an emergency four-hour endoscopic third ventriculostomy (ETV) to relieve the pressure caused by a build-up of cerebrospinal fluid (CSF). It was this pressure that had been making her feel sick when she stood up. Her surgeon said the pressure was so great he would have given her just 48 hours longer to live without intervention. He wasn’t sure how she had been able to remain so strong.
Phoebe had another seven-hour surgery five days later to resect her tumour. It went well and after she recovered she was put on three-monthly monitoring scans. Eventually these were moved to every six months and then every nine. One of her nine-month checks detected the little bit of the tumour, which had been left behind, had grown.
“It was half the size of Phoebe’s original tumour but even closer to her brain stem.”
In May 2021, our brave girl went back under the knife for another nine-hour resection. She was given a pink drink beforehand, something called 5-amino levulinic acid (5-ALA). This chemical dye causes tumour cells in the brain to glow under a special light and helps surgeons distinguish between brain tumour and healthy tissue. It allowed Phoebe’s surgeon to have a good clear out and remove more of her tumour by targeting the stray cells that lit up around it.
“Her first resection was such a blur there wasn’t time to process everything, but when it came to her second one, I had a bit of a wobble and needed counselling.”
I’d asked her to say something rude to me when she came round after the surgery and it was the first thing she said which is how I knew she was alright. But the seriousness of the situation hit me and I had a panic attack, which caught me off guard. I don’t know how neurosurgeons do what they do day in and day out, but I’m very grateful for them as I owe them my daughter’s life.
Phoebe suffered a few problems following her last surgery. For about nine months she experienced double vision known as diplopia, which she managed by wearing special prism glasses. Almost as soon as she was signed off by the optometrist, she started seeing a urologist to help her with toilet troubles. We’ve been told the messages from Phoebe’s brain to her bladder are a bit jumbled up.
“This may be something she has to live with but, considering what could have happened, it seems a small price to pay.”
In August 2022, Phoebe had her first annual scan. Our hope now is that these continue to come back clear because she’s been through so much already.
We spent most of our lives knowing almost nothing of brain tumours but a year before Phoebe was diagnosed, a close neighbour’s daughter died of a glioblastoma (GBM) at the age of 16. The wife of a colleague of mine also has one and it seems like they’re everywhere now.
Brain tumours are the biggest cancer killer of children and adults under 40, yet historically they’ve receive just one per cent of the money allocated to cancer research. It’s because of this we’re so keen to raise awareness of the disease and it’s why I want to help raise funds towards research, so that better ways to treat, and even cure, young patients can be found.
To practice what I preach, I’m going to be doing a Jump for Hope in June, which will involve completing a sponsored tandem skydive from 10,000ft. To help with my fundraising, please visit www.justgiving.com/fundraising/peter-lowe5879.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Phoebe’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure