Ten-year-old Thalia Fili Toseland, from Sheffield, was diagnosed with a diffuse intrinsic pontine glioma (DIPG) after experiencing problems moving her left hand and foot. The tumour is inoperable because of its location in her brain. Thalia has recently finished a six-week course of radiotherapy which has resulted in her regaining some of her movement. Her parents, Chris and Natali, are now considering their options which includes chemotherapy and the possibility of going abroad for a clinical trial. Chris is supporting Brain Tumour Research’s call to increase Government funding to study the disease.
Chris tells Thalia’s story…
In February 2023, Thalia said she couldn’t control her left hand as much as normal, and she had to think a lot about what she was doing. She is a big fan of gymnastics, so I thought she had maybe pulled or strained her hand from that.
Thalia then started to walk heavy-footed on her left side. My wife, Natali, and I took her to the GP who said he would refer her for a neurological assessment. While waiting for the referral, the control of Thalia’s left hand became significantly worse, and it was really worrying her.
The GP sent us straight to Sheffield Children’s Hospital. From tests she did, the consultants could see Thalia had problems with her reflexes. She had an MRI scan the same day which showed a tumour pressing down on the right-hand side of her brain.
“I was in total disbelief. There was clearly something wrong, but I never imagined it would be a brain tumour.”
From my job as a senior lecturer in cancer biology at the University of Sheffield, I associate brain tumours with symptoms such as sickness and headaches.
We were told the tumour was a diffuse intrinsic pontine glioma (DIPG) which was inoperable because of its sensitive location.
“It was like a sledgehammer had come down on us. There’s no standard clinical approach to this type of disease and it’s hard to comprehend that nothing can be done. In the UK, there are very limited options. There are more options abroad but only at trial stage, so it is experimental.”
For the first few days after hearing this we went into grieving mode because we already knew the outcome before anything had happened, but we had to get ourselves out of that state for Thalia.
“Our whole life as we knew it changed in an instant. It’s devastating but Natali and I haven’t had the time or brain space to contemplate it. We’re just riding a wave which we know will crash.”
Thalia needed to have a shunt fitted to drain excess fluid from her brain. She then underwent six weeks of radiotherapy at St James’s University Hospital in Leeds. With the travel from Sheffield, this took up so much time; it was so tiring, and Thalia missed being able to play with her younger sister Aneira. Despite this, it was worth it because the radiotherapy has had a positive impact.
“Some of Thalia’s movement has returned and the girls have been able to play together again. The treatment feels worthwhile because it actually did something. It should give Thalia more time.”
We are now discussing the next steps and options with the cancer team in Sheffield. This includes chemotherapy and the possibility of going abroad for a clinical trial.
“In the UK, there are very limited options for DIPG. With DIPG, everything is at trial stage so it is all experimental so it’s hard to know if going abroad for a trial is something we should do.”
We would need to move country for several months which would mean the children would be away from their friends. If more was available in the UK, we would go for it.
I’m amazed at the limited options available for brain tumours which is why I’m supporting Brain Tumour Research to help reach 100,000 signatures on its petition to increase research funding, and prompt a parliamentary debate. It’s calling on the Government to ring-fence £110 million of current and new funding to kick-start an increase in the national investment in brain tumour research to £35 million a year by 2028.
“I’ve signed the petition and encourage others to because money is so important; without it, there is no research.”
The Government needs to invest much more into studying DIPG because so little is known about this form of the disease.
Chris Toseland
June 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.
Brain Tumour Research is determined to change this.
If you have been touched by Thalia’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