Scans at Bristol Children's Hospital
Hospital scans confirmed she had a Wilms’ tumour (a cancer in the kidney). A week later Phoebe had her first dose of chemotherapy.
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Phoebe and Rory's Story
Flashbacks to her two-year-old daughter’s chemotherapy treatment for a tumour on her kidney still haunt Katie Brown.
Her daughter Phoebe, now five and in remission, underwent surgery to have her kidney removed just as the country went into national lockdown, in March 2020. Twenty-seven weeks of chemotherapy followed.
Katie and her fiancée Matt were instantly thrown into a world of isolation and loneliness, exacerbated by covid restrictions allowing only one of them to stay with Phoebe.
Juggling hospital stays, the uncertainty surrounding Phoebe’s illness and the impact on Katie’s mental health and that of Phoebe’s 10-year-old brother Rory, was crippling.
Katie said:
“It was so hard mentally and physically trying to cope with Phoebe and protect Rory. It was horrendous. I’m very close to my family. We felt as though we had lost everyone at the time when we needed them most.”
“Matt and I were lost.”
Phoebe's story
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Phoebe rang the end of treatment bell in October 2020
Phoebe has three-monthly scans, six-monthly blood tests and ongoing oncology appointments.
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So traumatised by events, the family prefers not to refer to Phoebe’s tumour as cancer
Instead they call it a 'weed' “because weeds grow in inappropriate places”.
Isolation and loneliness
The family said they have felt isolated throughout.
“I lost friends,” Katie said. “People sometimes don’t know how to support you or what to say. People find it hard to manage their own feelings. They can break away when you need them most. That was the hardest thing.”
Katie has also felt isolated at work. As a full-time nursery manager for two to three year olds - the same age as Phoebe when she was diagnosed - she has struggled a great deal with flashbacks to Phoebe’s illness.
Rory struggled with loneliness as they had to take him out of school three weeks before the country went into lockdown to shield Phoebe.
Support for the whole family
For Rory, meeting Wendy was the catalyst for him opening up about his feelings.
“Rory is a closed book,” Katie said. “He has a very close relationship with my brother but he was unable to be around him so it was very hard for him to speak about his worries."
They were referred to Rainbow Trust and initial zoom calls with Family Support Worker Wendy helped the family hugely: connecting them with the outside world and someone to confide in.
“It takes him time to build relationships with people but with Wendy they clicked straight away. It was beautiful, they blossomed together. When they met in person it was like they were best friends.”
Wendy supports the whole family, taking Rory and Phoebe on day trips and to the cinema and on walks and scavenger hunts.
She sees them less frequently now but is still pivotal in helping Rory manage his emotions and helping Katie overcome her anxieties over Phoebe’s scans.
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The family doesn’t talk about Phoebe’s illness.
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“That’s not because people won’t listen,” Katie said.
“You end up protecting others from what you’ve been going through. And in terms of isolation that’s very difficult. I shy away from talking
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Katie said her mental health would be much worse without Wendy and Rainbow Trust.
“Rainbow Trust is there for as long as you need them. It was the lifesaver we needed: to have that one person we could open up to.”
