Surrey mum's warning after losing daughter to ultra-rare brain tumour

Jody smiles near fire truck
-Credit: (Image: Sarah Levett)


“Just because I look fine doesn't mean I am fine.” When Sarah Levett’s daughter Jody was diagnosed with a rare brain tumour in 2018, normal life got put on hold. Her ‘bubbly’ 12-year-old underwent four years of treatment before sadly passing away, aged 16. Now Sarah is fighting to get more support for bereaved parents as well as more funding into brain tumour research.

Back in 2018, Jody’s diagnosis came as a surprise. Sarah, 45, told SurreyLive: “It came as quite a shock. She was quite bubbly, loved being with little children, absolutely loved school, had a few close friends, but the ones she had, she really cared about. She went through a massive four-year fight where she kept relapsing.

“She passed away when she was 16. We have since found out that she's likely the only one in the entire world with the type she had. We were always told it was extremely rare and they didn't have very much information on it.”

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Sarah and Jody together
Sarah said that everything took a back seat while Jody was in hosptial -Credit:Sarah Levett

While Jody was in hospital, she underwent intense chemotherapy and radiotherapy and several operations. The Godalming mother told SurreyLive that during this time everything, including her own wellbeing, took a back seat. She said: “Obviously, you're spending a lot of your time, sorting out appointments for your child and taking them to appointments and being in hospital with them. I'm diabetic, and when we were in hospital, I wasn't necessarily eating the right things. I was like as long as she's alright that’s all that matters.”

However, now Sarah wants to make a difference for parents that end up in her position, by petitioning for better mental health care for bereaved parents, as well as more money and research into brain tumours. She said: “Ultimately, the reason I've decided to do the campaign is because so little has changed. Brain tumours are one of the biggest killers in the under 40s. The government only puts a very tiny amount into funding. Despite hundreds of charities raising money for it there's very, very few changes in treatment in decades.”

“The other thing that's in the petition is something that a friend of mine picked up on, that after a child passes, the lack of support mentally you get. Basically, I decided that things need to change. People shouldn't be suffering the way that she had to, that's why I decided to start the campaign.”

In terms of research, Sarah said: “There are loads of charities out there that are researching, you've got Brain Tumour, you've got, Brain Tumour Research, but it's the fact that the government put so little into it, there's only so much they can do with what the public fundraise. There's just not enough there for them to be able to get to the core of what they need to get to.”

Between 2018/19 and 2022/23 the National Institute for Health and Care Research spent more than £11.3 million on research projects to address brain tumours and brain cancer. The Department of Health and Social care are looking into getting more research funded.

After Jody died, Sarah was offered some counselling but couldn’t bring herself to take it up. She told SurreyLive: “We were under our local hospice which meant I was offered counselling through them, but it was too soon. I also had to go back to the hospice where she died which was quite obviously very intense. Other than that, there wasn't a lot. It was only because a very close friend of mine made me go to the doctors in April last year things slowly moved. Then I was just, I was referred to mental health but then I was just passed from pillar to post.”

She also saw her GP, soon after Jody’s death, but wasn’t ready to talk. Sarah said: “I was kind of in denial, so I told them I was fine. It was only when my later friend persuaded me to go to the GP that it kind of escalated as to what state I was in.”

Sarah told SurreyLive she felt that the care she was offered was too short-term and too distant. She said: “You need long-term support because we're coming up two years and it doesn't get easier. There are crisis lines and things out there, but if you're anything like me, you're not going to pick up the phone in a crisis. I'd rather pick up the phone and message my friend.”

“I literally find it really hard to cry. I'd rather shut it all in. Everyone thinks I'm fine but apart from these two friends, they don't see the bigger picture that just because I look fine doesn't mean I am fine. People, including professionals, need to remember that.”

Jody with Micky Mouse
Sarah described Jody as girl who was "quite bubbly, loved being with little children" and " absolutely loved school." -Credit:Sarah Levett

While Judy was being treated, Sarah also found it difficult to speak to someone. She told SurreyLive: “I was offered to see the psychologist at the hospital she was at, but that would mean leaving her in her bed. I wasn't able to do it. It is very tricky. It depends on whether the child's willing to let you go for half an hour or not and with Jody being autistic, there was no way I was going anywhere.

"Something needs to change, I just don't know what. There needs to be more availability when you are having treatment but afterwards as well. Something more local. It's hard enough going for your child's treatment, never mind, having to drive yourself to chat with someone for an hour."

Sarah said that receiving some more support, in a way that suited her “would make a massive difference. She continued: “I've got quite a few friends that were there for me, but there's only two that I really can talk to, and putting it on them is quite a lot. They're not experienced, trained people so they can just be there for me as a friend. They don't know the best way to help.”

She is now trying to get as many people to sign her petition as possible, with the hope of getting a debate in parliament on the matter. Responses have come from those with personal experience of cancer, and those who were simply moved from the story. There have even been a signee from Australia.

However, for those who know a family going through a hard time now, Sarah also has some advice. When asked what the most important she they could do was, she said: “being there for them, listening to them, even if they don't feel they can help listening is one of the best things they can do.

“Encourage them to keep in touch with their GP, and their mental health team and keep pushing and keep pushing because you can go weeks and weeks without hearing from them.

“ I never would have gone to the GP back in April last year, if it wasn't for my friend. She persuaded me to go, she actually came and met me there. I wouldn't go in otherwise. She actually came in and sat there with me and the GP. She got out stuff that I potentially wouldn't have said If it wasn't for her. I'm not saying this to make people feel bad, but I don't know where I would be right now if it wasn't for her.”

A Department of Health and Social Care spokesperson said: “Our sympathies are with all those who have lost loved ones or who have been affected by a brain tumour. This government is committed to spending the targeted £40 million funding for brain cancer research.

“Together with the National Institute for Health and Care Research we will soon be launching a series of events to bring researchers together and strengthen our capacity to deliver game-changing clinical trials.”

You can find the petition here

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