Keen dancer Connie Campbell was diagnosed with a grade 4 medulloblastoma in September 2022 following a sudden bout of headaches and sickness. The then 11-year-old from South Woodford, East London, underwent surgery followed by induction chemotherapy and 30 sessions of radiotherapy. She also took part in a phase 3 clinical trial for high-risk medulloblastoma patients.
Here is Connie’s story, as told by her mum Tina…
Connie is quietly outgoing and is always with her friends. She’s been dancing since she was six, doing tap, modern and ballet. That’s what she was doing the weekend before she was diagnosed, and she has continued with it as much as possible despite undergoing treatment. There’s theatre too. Connie auditioned and got a part in our local pantomime just before receiving her diagnosis but, sadly, she wasn’t able to follow through with that after learning she was sick. She’s stopped doing acrobatics now, which she was enjoying but I think would be too much for her now.
She didn’t resume those classes after the summer break, which is when her symptoms first started.
We went to Thorpe Park during the August bank holiday 2022 and some of the rides were brutal. There’s a difference between getting thrown around a bit for fun and having your head ricochet so hard you don’t feel right after. Connie and I didn’t go on those rides again, but her dad and brother did. It was two days later that she started being sick, which seems too much of a coincidence for the two things not to be related. I suspect the rides dislodged her tumour and, if that’s the case, I’m glad because I was told we found it “at a good time”, before it spread to her spine.
She was just starting secondary school so she made every effort to attend but she’d get up in the mornings, throw up and complain that her head hurt.
By the afternoons, she’d feel fine. I took her to the doctor who suggested she was suffering from migraines. We were told to come back if her symptoms persisted, but I get migraines so didn’t believe that’s what she had. A few days later Connie had another bad turn. I wanted to take her to A&E but I was worried that if her symptoms settled, as they normally do, they would also send me away. Instead, I rang the NHS 111 helpline. They asked for permission to speak to our GP who called us in to check Connie over and then referred us to the paediatric department at Whipps Cross University Hospital, in East London. The referral didn’t come through straight away so I phoned to chase it, which resulted in her getting booked in the following day.
When we got there, they checked Connie over and suggested she had an MRI scan to rule out anything sinister, but there was a wait list for this. We had been told she was priority so, once again, I chased the hospital to get her booked in. Two days before she was due to have the scan, her condition worsened and I was becoming extremely worried. I took her back to the paediatric department where we were given the option of waiting for the scheduled MRI or to have a CT scan that same day, so I agreed to the latter.
It was after that we were told she had a brain tumour and would be transferred to Great Ormond Street Hospital for Children (GOSH).
As Connie was stable, she was able to stay at Whipps Cross until 1st October when a bed became available at GOSH. On arrival, she was given an MRI scan which showed her spine was clear. I didn’t understand why they were looking at her spine, but I now know it's because tumours can spread through a person’s cerebrospinal fluid (CSF). Connie underwent surgery to remove her tumour three days later by which point I was beginning to feel quite overwhelmed.
Her surgeon, Dr Owase Jeelani, told me to expect a marathon rather than a sprint as here treatment wouldn’t end after her operation.
He advised us Connie’s tumour was the size of a small orange and prepared us for the probability she would need chemotherapy and radiotherapy. He was right. A biopsy taken during her operation revealed she had a grade 4 medulloblastoma.
Post op tests of her molecular data showed she had large anaplastic cells, putting her in a high-risk category. Fortunately, this also made her eligible to participate in a phase 3 clinical trial for high-risk medulloblastoma patients, which we were told offered her the best chance of recovery.
The SIOP-HRMB trial aims to improve patients’ survival whilst limiting the impact of side-effects from their treatment.
Connie had 10 months of treatment as part of the trial instead of the standard protocol of 12 months. After two rounds of induction chemotherapy, Connie had 30 sessions of conventional radiotherapy at University College London Hospital (UCLH), which finished in February 2023. Her bespoke mask was painted in leopard print in memory of my mum and featured our dog Lula and a dancer to represent her love of dance. She tolerated the radiation better than most adults, but I know it was a difficult thing for her to go through, especially when she was just 11.
For the final part of her treatment we were randomised for the shorter chemotherapy, which meant Connie only had six months instead of eight. The trial helped Connie’s wellbeing because she was able to remain at home and have oral chemo instead of having to go into hospital and spend long days on an IV drip. Whenever she went into hospital, her personality and whole demeanour would change, this treatment plan meant she was not as traumatised as she maybe could have been.
During her time in hospital, she met Lewis Hamilton. He visited all the children and spent 30 minutes with us asking all about Connie’s journey and taking an interest in our son Albie. Connie made a bracelet for him in his team colours and the visit gave us all a boost. He came across as kind and gentle and now has four new fans.
We do a lot of alternative holistic stuff, which I really believe has supported and strengthened her to get through it. I met an independent nutritionist who specialises in paediatric oncology and she encouraged me to be mindful of what I’m feeding Connie, so she now has organic food and I cut out bad sugars from her diet.
I don't know if the trial was better than the standard treatment. I don't have the answer, but Connie is alive and she's surviving. She's back at school and doing everything she wants, albeit with issues that the tumour has left.
I didn't realise there were so many different types of chemotherapy. I just thought it was a one stop shop. To be told Connie had the choice of a trial which was her best hope of survival made me feel like we had to go for it. Part of me wondered if it was the right thing to do as it feels like a bit of a gamble.
If clinical trials can help bring change and help people, that’s a good thing. I was really shocked to learn that not much has changed with treatment for several decades. I would have thought we would have been so more advanced.
Now, Connie has a scan every six months. Her next one is on the 24th of November 2025.
Each time a scan approaches, I just feel like I go through the motions. I can't get elated. Every time they say it's a clear scan I'm relieved, but I worry the next scan might not be clear.
You hear the tumour could come back at any time; there's no pattern to this. It's not like fixing a broken leg or having your appendix out where you return to normal afterwards.
It's just a beast. That's the only way I can think about it. I just have to hope it stays away.
Connie’s fertility has been preserved through the cryopreservation of her eggs. It’s nice to think about her having a future with children of her own.
She knows what cancer means and that what she has is serious, but I think she’s living in some denial, preferring to block out the details of what’s happening to her. She’s at a difficult age now 14, and trying to navigate her way through all this can feel quite isolating.
Living with the possibility of her tumour coming back makes me feel like a sitting duck holding onto a ticking time bomb. But this drives me to do all I can to raise awareness of this disease. I ran the London Marathon this year which was amazing. Connie’s school, Woodbridge High School in Woodford, has taken part in Wear A Hat Day and Connie is one of the faces of the Brain Tumour Research Christmas Appeal 2025. Connie and I are calling on people to support the appeal and spread hope by helping to fund more research.
Connie and I want people living with brain tumours to know there is hope of a better future. Even the smallest contribution can change a lot because every donation turns into research breakthroughs that take us closer to a cure for all types of brain tumours. Instead of buying an expensive Christmas latte, please think about donating that money to Brain Tumour Research to make a real difference to brain tumour patients.
Tina Smith
November 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Connie's story, you may like to make a donation via https://braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy.
Together we will find a cure.
