In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Keen dancer Connie Campbell was diagnosed with a grade 4 medulloblastoma in September 2022 following a sudden bout of headaches and sickness. The 11-year-old, from South Woodford, East London, underwent surgery and is now on a phase 3 clinical trial for high-risk medulloblastoma patients. She has had induction chemotherapy, 30 sessions of radiotherapy and will soon be starting a six-month course of maintenance chemo.
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, 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 that 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 last year 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 but it was 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 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. Having been told she was priority, when we didn’t get the call we were expecting, once again I chased the hospital to get her booked in. Two days before she was due to have it, 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 having 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 1 October when a bed became available at GOSH. On arrival, she was given another MRI scan which we were told showed that 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 op revealed she had a grade 4 medulloblastoma and 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.”
Everyone taking part is treated with two courses of induction chemotherapy before moving onto one of three radiotherapy strategies, conventional radiotherapy, hyperfractionated-accelerated radiotherapy (HART) or high-dose chemotherapy followed by conventional radiotherapy. They will then have maintenance chemo, either in the form of the current standard four-drug regimen or temozolomide, which is given orally for six cycles.
“Connie coped well on her induction chemo in November and December, but she did lose her hair with just a few wispy bits remaining.”
She likes to wear a beanie or turban and her eyelashes are just starting to come back, which is great, but it’s been a really hard thing for a young girl starting a new school to go through. It was during her time on the ward that we met Lewis Hamilton. He visited all the children there 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.
Connie then had 30 sessions of conventional radiotherapy at the University College London Hospital (UCLH), which finished in February. 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 at her age – she turns 12 in June. She’s suffered with some fatigue since and often has to sleep in the day but is otherwise doing pretty well.
“She’s due to start maintenance chemo next week and, thankfully, she will be on temozolomide, which means she won’t have to go into hospital.”
I’m relieved because I worried that having to go somewhere she didn’t want would lead her into a dark hole of depression. At the moment, I feel like she’s a shadow of her former self. She’s withdrawn and doesn’t really want to engage with adults. I think she’s just a bit fed up with it but I worry about the impact it all is having on her mental health and wellbeing. Dancing is the only thing that seems to help.
“I met with an independent nutritionist who specialises in paediatric oncology and she encouraged me to be mindful of what I’m feeding Connie so she’s now having organic food and cutting out bad sugars.”
It’s costly but I have to do it because I’m scared of what could happen if I don’t. Fortunately, the insurance company I work for has been really supportive, allowing me the headspace I need to cope with everything and support Connie whilst keeping my position open.
“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 and trying to navigate her way through all this can feel quite isolating. Her scan in December was clear and now we’re awaiting the results of her most recent one before continuing with treatment. Living with the possibility of her tumour coming back makes me feel like a sitting duck holding onto a ticking time bomb.
As a distraction, and because I now understand how poorly funded brain tumour research is, I’ve asked Connie’s school, Woodbridge High School in Woodford, to support Wear A Hat Day on 31 March. The headteacher has agreed and now it’s just a case of coming up with some good ideas for what the pupils, including Albie, can do besides wearing a hat in exchange for making a donation.
“It’s a big school so I hope it will be able to raise a lot of much-needed funds for research.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
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 www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
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