In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Indie Thomas, from Chorley, Lancashire, started being sick in the spring of 2021, when she was four years old. Her parents, Danielle and Danny, thought she had a sickness bug, which was confirmed when they took her to hospital. When Indie became incontinent and was unable to walk properly, she had a scan which revealed an inoperable mass on her brain - a low grade glioma. Now six years old, Indie recently finished her last dose of chemotherapy.
Indie’s mum Danielle tells her story…
During spring 2021, Indie had what we thought was a sickness bug. My husband, Danny, and I took her to Royal Preston Hospital.
The doctors also thought she had a sickness bug, but over time Indie lost all control of her bladder, to the point where she would wet herself and not realise.
The GP gave her antibiotics for a water infection but by then, Indie couldn’t walk properly, and she would drift off to one side.
We went back to the hospital on 3 September and the doctors did lots of neurological tests, followed by an MRI scan which revealed a large mass in the centre of her brain which was filled with fluid.
“I was in total shock because the doctors were adamant Indie was OK. I just felt total panic and thought she was going to die.”
I felt so confused, which then turned to panic; I was so upset. From research, I knew the statistics for brain tumours were not good.
Indie was transferred to Royal Manchester Children’s Hospital for a six-hour operation. I was in bits; no child should have to go through that.
The surgeon said everything had gone to plan, but he could only remove a small sample during the biopsy because of the tumour’s sensitive location.
We were told Indie had a low grade glioma. For two days after the biopsy, Indie was out of it, and she needed to have a catheter fitted.
An ophthalmologist could see there was a lot of pressure behind Indie’s eyes, so she had a shunt fitted to remove the excess fluid from her brain. That made a massive difference.
Indie stayed in hospital for two weeks before starting a course of chemotherapy. It made her poorly for days with vomiting, cold sweats, muscle cramps and aches. It made her very weak and caused her to lose her hair, which is a really big thing for a six-year-old girl.
“It seems so wrong to be pumping what is really a poison through your child's veins at the best of times, even more so when you know they are allergic to it. This drug is the only thing stopping the beast in her brain from growing and causing even more damage than it already has.”
The tumour has taken all of the sight in Indie’s left eye, and half of the sight in her right eye. It's absolutely heartbreaking there’s nothing anyone can do about this. We know it will take her, but it didn’t need to take her sight.
Indie has times when she’s upbeat, but her confidence has been massively knocked. She worries about things she shouldn’t have to, like instead of worrying about homework, it’s worrying that she has chemotherapy the next day. It’s absolutely heartbreaking.
I feel really angry there isn’t enough awareness of brain tumours. In March 2023, Brain Tumour Research announced a £2.5m funding agreement with The Institute of Cancer Research (ICR), in Sutton, Surrey, to help find a cure for the deadliest of all childhood cancers, like Indie has.
This announcement means the world to us. We can do unbelievable things in this day and age, but we haven’t found a cure for brain tumours. Children shouldn’t be losing their lives because of a lack of Government funding. Our whole world revolves around Indie’s tumour, so anything that can progress research into this devastating disease is so important.
“The tumour has stolen Indie’s childhood, she’s sat in bed being violently sick because of the treatment with not very much reward, and that really hurts. Our lives would be completely different if more research into this type of brain tumour had been done earlier.”
We are now working with Brain Tumour Research to raise money to support long-term research. On 1 April 2023, Danny and I were joined by family and friends for a 26-mile walk from Blackpool to Chorley which was such an amazing day.
“I do sit and cry sometimes but that doesn’t do anything. I was walking for Indie but also for all the other people who are going through this. If we can raise money and awareness, then something good will come out of this horrible mess because I don’t want all of this to be for nothing.”
On 3 July 2023, Indie endured her last chemotherapy session. To say we are proud of her bravery and resilience is an understatement. It will take more than a brain tumour to keep our girl down for long! She always bounces back with a smile.
Our fight continues but she has well and truly smashed this first battle.
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 historically just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure.