Kaiden's Story - Medulloblastoma

Kaiden's Story -

Medulloblastoma

Kaiden was just seven when he was diagnosed with a brain tumour called medulloblastoma. 

In November 2021, parents Kathryn and Simon noticed that he was quieter and more lethargic. Kaiden had always been a happy and active “ball of energy” who loved dancing and swimming.

Kathryn said: “He was so full of life and I never wanted that to change.”

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However, he started experiencing dizziness and nausea, and he had several appointments at the GP over the following months, with worsening symptoms including issues with his sight and sickness.

He was referred to hospital for an MRI scan, which took place in June 2022. Two days later, Kathryn and Simon were called back in to be told the scan showed there was a tumour the size of a golf ball in Kaiden’s head. 

Kathryn said: “I remember thinking ‘This is us now – we’re in the club that no parent wants to be in’

“For me the worst bit was when the consultant was trying to tell Kaiden because I didn’t want him to know and I couldn’t bring myself to tell him.”

Kaiden had emergency surgery on 27th June, followed by a further operation at the beginning of August to fit a shunt to drain fluid from the brain. Then started proton beam therapy at UCLH in September 2022, which meant 30 days of treatment under general anaesthetic for six weeks.

He had six weeks of recovery and then chemotherapy started in December 2022 and continued for the next 36 weeks.

During this time, Kaiden was admitted to hospital several times with infections, and needed a series of blood and platelet transfusions. He stopped eating and needed a feeding tube too.

Kaiden remained positive and took things in his stride even though he needed to use a wheelchair when he was tired.

Kaiden’s dad, Simon, said: “One of the hardest things was hearing Kaiden come out with things like ‘why me?’ because you can’t answer that.”

Kaiden rang the bell to mark the end of treatment in July 2023. In September, his feeding tube was removed and also his Hickman Line, which meant he could go swimming again.

Kaiden’s parents said he has been brave throughout his treatment, all with a smile on his face and telling his favourite jokes!

In March 2024, Kaiden relapsed and has restarted chemotherapy.

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