Lola's Story

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Jodie and Darren are parents to four-year-old Lola, and five-year-old twins, Isaac and Isla.

In May 2022, Lola had a poorly tummy and complained of stomach pains – it was not long before Jodie noticed a lump on Lola’s tummy and took her to their local urgent care walk in centre. Lola was immediately sent for an ultrasound which showed a mass on her kidney, and she was then sent to Newcastle Royal Victoria Infirmary for a CT scan which confirmed the mass was a Wilms tumour. A Wilms tumour is kind of kidney cancer.

Jodie explained how quickly Lola began treatment after her diagnosis:

‘Within two days of being confirmed with a Wilms Tumour they sent Lola to theatre to have a catheter fitted. Then they started chemotherapy straight away, and then she went for surgery six weeks after the diagnosis to remove her left kidney.’
‘She had more chemo after that, and then in December Lola complained of more stomach pains so we had another scan, and it was confirmed she had relapsed, and they found more tumours in her tummy.’

Jodie described the difficulties her and Darren face having a seriously ill child while trying to balance life and other commitments:

‘It’s hard with Lola being in hospital all the time, but we try and get ourselves a routine which helps, as well as having help from family members and Jen from Rainbow Trust.’

Having a seriously ill child changes family life and Jodie explained how the family don’t get to do as much as they used to together.

‘We are separated a lot, especially from the twins, as we are backwards and forwards from the hospital. It’s a lot different from what it used to be like. We used to do things on the weekend, like going out with the kids. But we can’t do this as easily. If the twins want to go somewhere then we have to leave Lola behind.’

The family also find it isolating at times as due to the nature of Lola’s condition, they have to keep their bubble small to make sure she does not catch anything.

‘It’s challenging and it can be exhausting, making sure you’re on time with all the regular mediations and things. I was a bit nervous at first on taking on Lola’s medical needs, but the hospital trained us up before. I got used to it quite quickly.’

Jodie got talking to another parent on the ward who was being supported by Rainbow Trust and quickly reached out to self-refer for support. Rainbow Trust Family Support Worker Jen has been supporting the family since July 2022, providing sibling support for Lola’s brother and sister – Isaac and Isla.

‘I was worried about the twins and wanted them to feel supported throughout it all. Jen is just really good because she takes them to soft play, or to different places and she visits them in school to play with them there. They really enjoy it’.
‘It’s made such a great difference to Isaac and Isla’s lives, Jen makes sure they still have fun and makes it all about them when she’s about. Life without Jen would be tougher, because Isaac and Isla wouldn’t have as much play time and time to themselves. She helps answer any questions that they have, as they tend to open up to Jen a bit more than they do to me.’

Jodie encourages parents of a seriously ill child to reach out to Rainbow Trust:

‘You can ask them anything and they will help you with what you need. It’s just really good.’

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Continued support for a family for as long as they need us

Hearing your child has a life-threatening illness is the hardest thing any parent can experience - but they don’t have to go through it alone.

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