Schoolgirl Isla from Somerset was diagnosed with an extremely rare intracranial sarcoma in January 2022 aged seven. Her diagnosis followed weeks of headaches which doctors thought could be caused by dehydration. Days after her diagnosis, Isla who is now nine, had a nine-hour operation followed by radiotherapy and chemotherapy. Her story has inspired a whole community of fundraising and her mum, Sarah is sharing their family’s experience of living with the disease.
Here is Isla’s story, as told by her mum, Sarah…
The change in Isla’s health from Christmas 2021 to January 2022 seemed to happen all of a sudden. She went back to school after the festive break but after a couple of days complained of painful headaches. Like many parents with children who are school age, we thought this could be a bug.
It seemed to come in episodes of severity. Getting a GP appointment was difficult, so I phoned 111. Isla wasn’t keeping anything down and was too poorly to be in school. They sent an ambulance and we were taken to Musgrove Park Hospital. Isla was assessed and doctors concluded that her headaches were the result of dehydration. They gave me a syringe filled with water in an attempt to rehydrate her and sent her home, but her symptoms continued.
I felt as though mine and David’s (Isla’s dad) concerns weren’t being taken seriously and were dismissed every time we phoned the GP for an appointment. Each time being told it’s likely to be a sickness bug that hasn’t fully cleared up. One time, they suggested we keep a food diary but by this point Isla wasn’t eating much.
She was never fully well in between the bouts of headaches and vomiting but no-one saw her when she was at her worst which made me think it had to be something more.
After sharing my worries with a friend, who also echoed concerns with Isla’s health, I took her to A&E. We saw an amazing doctor who reassured us that they would check Isla over thoroughly. It felt like we had been scooped up into the arms of someone who listened to the list of symptoms that Isla had been experiencing.
They gave Isla an MRI scan and part-way through, they injected a contrast dye into her veins, I assumed they found something unusual during the scan. Before we received any results, Isla continued to have all the health checks the doctor had promised us. She saw an optometrist who noticed something pressing on Isla’s optic nerve.
I was alone when they told me that there was a mass growing in between the two hemispheres of Isla’s brain. My first question was ‘is it operable?’ to my relief the answer was yes however they couldn’t tell me anything else.
Isla’s case was referred to the neurology team at Bristol Children’s Hospital where we were taken by ambulance.
“I had to ring my partner, David, and tell him that our daughter needed surgery for a mass on her brain and he met us there.”
Days later Isla had a nine-hour operation. David and I were at a loss of what to do. My parents were looking after our youngest daughter, Anya. The nurses advised that we leave the hospital, suggesting the best thing we could do is find clothes that Isla could put on easily after surgery.
My parents brought Anya to meet us and it was nice to be able to explain to her in person that her sister was in hospital because the doctors found a ‘naughty ball’ in her head that shouldn’t be there – the same way that staff explained the diagnosis to Isla. In that moment, everything felt surreal.
After surgery, we waited for the histology report to tell us what type of tumour we were dealing with. Its complexity stumped the medical team at Bristol. We were fast approaching the favourable window of time to start treatment post-surgery, which we knew she needed as we were warned that what they removed was likely to be aggressive.
Her case was referred to Great Ormond Street Hospital (GOSH) who told us that Isla had a CIC-rearranged intracranial sarcoma which are incredibly rare. This type of tumour often grows in soft tissue throughout the body but Isla’s had grown in a cyst in between the two hemispheres of her brain.
We were told that there were not many known cases of Isla’s tumour however Isla had a mutation that is found in a ewing sarcoma and so they would treat it in the same way. For me, it felt like they were doing the closest fit to treatment as they could due to having no tried and tested cases for the type Isla was diagnosed with.
Isla had radiotherapy for six weeks which meant we were travelling to hospital five times each week. Chemotherapy started a couple of weeks later, alternating between a three or six day cycle.
Isla was amazing with her treatment, the nurses even commented with on how she handled it, showing no signs of fear, perhaps because she was mirroring how David and I were presenting and the open dialogue that we kept with her.
Half-way through chemo, Isla seemed to lose interest in everything she used to love and struggled to think straight. She was left with muscle wastage and was weak from spending so much time in a hospital bed.
She lost weight as the chemo meant a change in her taste buds and she had no appetite. Despite treatment finishing in November 2022, Isla had a feeding tube for a year which wasn’t removed until April 2023.
By summer 2023, we had the old Isla back. She was building up her energy levels and stamina and learning to move with the energy you’d expect from a young child.
She missed school for the whole time she was having treatment, she left half-way into Year 3 joining back in Year 4 after Easter in 2023 which she was very excited about. Equally her school, especially the headteacher at her first school, was incredibly supportive, getting behind fundraising initiatives and explaining to fellow pupils all about Isla.
She needs some tutoring in maths, but otherwise it’s amazing to see her back with her peers however after everything she has been through, there’s a fine line between encouraging Isla to keep up with what her friends are doing and ensuring she isn’t pushing herself too far so that she becomes poorly.
Isla’s most recent scan in October showed no signs of re-growth and her checkups have been moved to four-monthly.
This will be the first Christmas without medication and we are looking forward to spending it as a family, hopefully with no trips to hospital and no side effects from medication. 
David and I were thrust into a world we knew nothing about. We feel like one of the lucky ones, that Isla has had the tumour removed and the fact that treatment has been an option. I understand that this isn’t always the case for brain tumour patients.
If Isla has taught us anything, it’s to not wait do to the things that you want to. It’s encouraged us to take more family trips and not save the best things for another time.
We live everyday not knowing if the mass will return and if it does, doctors have already told us that treatment options are limited. Our hope is that by talking about Isla’s story, we can expose the underfunding for investment into brain tumour research and be part of the solution to offer hope and solutions for patients. There should be no guess work when it comes to treating patients.
Sarah Baker
December 2023
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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Isla’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