Kaiden’s Medulloblastoma Story
“I have huge hopes that one day in the future, children like Kaiden can have much kinder cancer treatments. That they don’t have to suffer in the way that Kaiden has, relentlessly, for nearly four years.”
Kathryn, Kaiden’s mum
Support children like Kaiden so that they have a future they deserve.
Kaiden’s symptoms
When Kaiden, an energetic seven year old started suffering headaches, dizziness, vomiting, and couldn’t face his beloved forest school, his mum Kathryn knew something was wrong.
An initial GP visit in October 2021 led to blood tests revealing iron deficiency and then a migraine diagnosis. As Kaiden’s terrible headache and other symptoms worsened, his mother Kathryn became increasingly worried and feared brain tumours.
She persisted with her concerns, repeatedly requesting a paediatrician appointment and an MRI. Eventually, eight months after Kaiden’s first GP visit medulloblastoma was diagnosed. This is the second most common brain tumour in children and the most common malignant (high grade) form.
This diagnosis and treatment shocked and challenged his whole family.
“Having a child with cancer can really affect the siblings. They’ve witnessed Kaiden recovering from operations, watched his hair fall out, seen him vomiting time and time again. Cancelling plans due to hospital admissions, or Kaiden being unwell. We’ve had to adjust every aspect of our lives.”
Kathryn, Kaiden’s mum
Getting it right for children
She explains that while she and her husband are very grateful to the people working so hard to save their son’s life, they know that much of the treatment is too strong for children. Researchers and doctors face a major challenge in making treatments safer and minimising the risk of treatment-related harm in young patients.
“Kaiden has been given the same chemo as fully grown adults. The effect on a tiny child’s body and mind is truly devastating. Perhaps if there were child-specific treatments he could do the things he loves – go to school, swim, hang out with friends.”
Kathryn, Kaiden’s mum
By July 2023 it seemed the treatment had worked. But then in March 2024, the family was told the cancer had returned – to Kaiden’s spinal cord.
At 6am, I woke to Alex’s screams. He would be in distress for around 10 minutes, then settle for another ten, then scream again. He seemed to be drifting in and out of consciousness and was having problems walking, so we knew something was really wrong. I called an ambulance who rushed him straight to A&E.
Within two hours, Alex was diagnosed with acute lymphoblastic leukaemia and transferred to Nottingham’s Queens Medical Centre’s Paediatric Intensive Care Unit. By 5pm that same day, he was in a medically-induced coma.
Focusing on tomorrow
For now, Kaiden’s chemotherapy continues.
“His tumour is inoperable, so he has a port fitted to his head to deliver chemo into his spinal fluid. This chemo makes him so sick – relentlessly – probably the worst of them all. Kaiden handles it well, and a lot of the time with a smile, but he shouldn’t have to.”
Kathryn, Kaiden’s mum
She explains that the future can feel frightening. “I limit my hopes to tomorrow… One nurse told me: ‘Don’t worry about what might happen or what’s coming. Just focus on what is going on right now and make the most of every moment.”