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Rehabilitation for children with brain tumours

Robbie’s Rehab was set-up in memory of 10-year-old patient Robbie Keville who was diagnosed with a malignant brain tumour at the age of eight.

This fund provides specialist medical professionals to help children with brain tumours for children who need specialist rehabilitation during and following their treatment for cancer.

Together we can make a difference.

Elspeth’s story: Robbie’s Rehab helped us all cope.

Robbie’s Rehab provided expert support at home to help 12-year-old Elspeth and her family manage the aftermath of her brain tumour. Elspeth’s mum Melissa explains how.

“Diagnosing Elspeth’s brain tumour was a slow burn. She was tired at the weekends and had headaches at the front of her head and occasional blurred vision. But she was also doing things you wouldn’t expect a girl with a brain tumour to do: like ballet.

Eventually we had an MRI scan which found a tumour in her head the size of a tangerine. That felt absolutely devastating. It was so hard to find the words to tell her about the operation she needed to have. The ward referred us to Robbie’s Rehab, who helped us find ways to manage her anxiety.

Elspeth’s Story

Support through a tough time

Thankfully, her operation was a success. She was diagnosed on the Monday and the tumour was removed by Friday. But I was really worried about how she’d feel in the aftermath.

That’s where Elspeth really benefited from Robbie’s Rehab. Taryn from the clinical psychology team talked with her about managing her anxiety and the positive measures she could take to cope. Now Elspeth has a regular one-to-one Zoom session to talk about her worries. I just leave them to it and check-in at the end.

Elspeth’s doing really well now – although she gets anxious about her school homework! It was an incredibly tough time but Robbie’s Rehab helped us all cope.”

Harry’s story: It was unknown territory for us.

When six-year-old Harry was diagnosed with brainstem glioma (an aggressive type of brain tumour) Robbie’s Rehab was there to provide expert support for the whole family. His mum, Fiona explains how…

“We met with Lucy from Robbie’s Rehab’s child clinical psychology team at Harry’s initial diagnosis.

Harry’s sister was only eight years old and we worried about how she would process her brother’s diagnosis. It was unknown territory for us and I felt I needed the tools to help me. Lucy provided us with the information and resources we needed to manage this difficult time.

Coping with severe anger

After his treatment Harry was displaying severe anger – which appeared to come from nowhere. The team gave us recommendations on how to support Harry. This was incredibly helpful and we’ve seen a massive improvement in Harry’s anger.

Robbie’s Rehab also helped put together a hospital story for Harry, so he could reflect on his journey. At first, he was reluctant to talk. But the team were able to ‘read’ Harry and get on his level.

The team let Harry lead the sessions, which was so important. After all, it’s the child who has to get through it.

An essential service

Robbie’s Rehab has been second to none and incredibly helpful to us all. I couldn’t have got the information anywhere else – this service is so important.

Our family have seen such a massive improvement since accessing Robbie’s Rehab. I can’t thank them enough!”

Last updated: 02/07/2020