Eleven-year-old Bailey Clark, from Hull, has three brain tumours. The first was discovered during an MRI scan after he had a different type of seizure normally associated with his epilepsy. He had a biopsy, followed by eight months of chemotherapy which made him very poorly. In February 2020, surgeons managed to remove 90% of the tumour, but a scan in November revealed a second tumour had grown next to the original one. A third tumour was discovered in September 2022. Bailey had proton beam therapy and is now waiting for the results of his latest scan.
Bailey’s mum Helen Gibson tells his story…
Bailey is such a happy boy who smiles and giggles all day.
He has a rare genetic condition which is linked to him having autism, epilepsy, low muscle tone, hypermobility and a visual impairment.
In August 2018, when Bailey was seven, he had a different type of seizure to those associated with his epilepsy. I requested that he have a scan, but we had to wait until January 2019 for the MRI which he had at Hull Royal Infirmary.
“They found a mass on his brain and immediately sent him to the children’s ward. Everything happened so quickly.”
Bailey was sent to Leeds General Infirmary (LGI) for a biopsy which confirmed he had a glioma.
“In April 2019, Bailey started an eight-month course of chemotherapy which was awful. He needed to have so many blood and platelet transfusions, he was very poorly. He was struggling to breathe and needed to be put on a ventilator.”
We thought it was croup, but he actually had vocal cord palsy which is a very rare side effect of one of his chemotherapy drugs.
“A scan in November showed the chemotherapy hadn’t had any effect; I felt so angry because bailey had gone through so much for nothing.”
In February 2020, Bailey had the tumour debulked at LGI. They told me they managed to remove 90% of the tumour. Unfortunately, an MRI scan in November revealed a second tumour had grown next to the original one. I was told it was small and no operation was needed, instead preferring a ‘wait and see’ approach.
A third tumour was found on the left-side of Bailey’s brain in September 2022. I was told it was inoperable, with the only option being proton beam therapy which would be in either Manchester, London, or Germany. Fortunately, Bailey was able to have the treatment in Manchester.
“It went really well and the staff at The Christie in Manchester were so nice. Because of his autism, Bailey needs structure, so they gave him the same bed in the same room each time which was lovely.”
The treatment began on 18 December 2022 and finished at the end of January 2023.
“Because it was over Christmas, Bailey and I had to stay in an apartment in Manchester. Christmas Day was horrible; we were on our own in a city we didn’t know, and the streets were empty.”
Because of this, Bailey and I celebrated Christmas with my parents at the start of December. My brother came all the way from Australia just for the weekend. We had Christmas dinner and presents which was lovely.
Bailey had a check-up MRI scan in July 2023 which unfortunately showed some growth. I was told it may be due to inflammation which can still go down. Bailey’s next scan is on 19 October.
“I’m really angry at the lack of funding for research into brain tumours. 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 brain tumours since records began in 2002. The low level of funding is ridiculous, much more needs to be done.”
I’ve signed Brain Tumour Research’s petition which calls 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.
It needs to reach 100,000 signatures the hope of prompting a parliamentary debate, so I urge others to sign it.
I’m taking on the 100 a Day, Your Way in November Challenge to raise vital funds for research. I’m hoping Bailey will be able to do it with me, so I’m planning to do activities he can do such as clapping hands, jumping and popping bubbles.
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.