The Leavey family battled tooth and nail to prolong their daughter’s life after she was diagnosed with a diffuse midline-glioma (commonly known as DIPG) at the age of just 10. Brooke, who lived in Southampton, was given the devastating news after she developed a droop on one side of her face. She had six weeks of radiotherapy through the NHS and took part in two privately funded clinical trials. Throughout their daughter’s diagnosis the family spent £200,000 on monthly trips to New York and Germany where the clinical trials were taking place. However, the aggressiveness of the cancer took over and Brooke died 11 months later.
Here is Brooke’s story, as told by her dad, Dan…
We never told Brooke the type of tumour she had. She was a very bright girl, inquisitive – she would have seen straight away the stark prognosis of children, who, like her were living with a DIPG.
She was diagnosed in April 2019, at the age of 10. Photographs of Brooke, which we took during half-term showed one of her eyes was slightly closed compared to the other. She went on a week-long trip with the school and returned complaining of feeling tired, and her eye had worsened.
The GP referred Brooke for tests at the hospital and initially she was being investigated for Bell’s Palsy which is often caused from a tick bite becoming infected.
An MRI scan late at night on the third day of tests confirmed Brooke had a brain tumour.
We were taken to a room and told this type of tumour is very aggressive, and due to the location of the mass on Brooke’s brain it was inoperable.
“The news wasn’t sugar-coated and we struggled to work out why we were being told to focus on the quality of life rather than saving a life.”
You watch these kinds of scenes on the TV and think ‘oh that’s sad, but that would never happen to me or my family’. But it was happening to us – nothing can prepare you.
For two weeks after, my wife Lisa and I felt helpless, useless in fact. Everything was happening quickly and over the course of a night it was like we had taken a sledgehammer to the face.
A biopsy confirmed the tumour type and we knew we were living with a terminal prognosis. The procedure also left Brooke with weakness down one side of her body which meant she had to rely on a wheelchair to get around.
We temporarily moved to accommodation in London called Paul’s House (provided by the then named CLIC Sargent) which was five minutes away from University College Hospital London (UCLH) where Brooke was having radiotherapy. This allowed us to spend time as a family and our youngest daughter Amelia could visit with her grandparents, for that we were and still are so thankful.
We searched the internet for a clinical trial which could help save our daughter’s life. We felt frustrated with the lack of treatment options available through the NHS. It was as if they were working from a brain tumour treatment guidebook, knowing that there isn’t a-one size-fits-all when it comes to brain tumour patients.
Since looking into this, we understand that the frustrations are echoed throughout the brain cancer community. Our experience only highlights the lack of funding for investigating the disease.
As we researched furiously for a clinical trial to get Brooke onto, we were forced into conversations with private consultants. This sparked our friends and family to start fundraising on our behalf as we knew we were going to have to self-fund any treatment, and the costs would be extortionate.
For five months from September 2019, we made monthly trips to New York to pick up the trial chemotherapy medication. With every trip, we had to have an up-to-date MRI which cost us £4,000 per scan.
On one visit we even bumped into Whoopi Goldberg in Schwarz toy store, who bought the girls a Build-A-Bear teddy each. She was moved by Brooke’s story and even wore a 'Brooke band’. These bands where designed by two of Brooke’s school friends and were used to show support and also help with funding.
“By February 2020, Brooke’s symptoms were worsening which was a sign of the cancer progressing. We continued with the trial, this time in Germany.”
The regular scans showed that things were happening and there was some shrinkage in the tumour. However, the cancer was very aggressive, and eventually Brooke began to succumb to its effects.
We went on a family holiday to Tenerife at the start of 2020. But by the time we arrived home, Brooke was struggling to swallow and we went from Bournemouth airport to Southampton General Hospital where we were given a crash course in feeding Brooke through tubes. We knew the cancer was advancing.
We had a hospital bed in the lounge with nurses visiting during the day – all during the same time we kept Brooke on the trial drug from Germany.
Brooke died on 14 March 2020.
As a father, and a family, I believe everything we did helped Brooke. We had 11 months from when she was diagnosed to when she passed away. She was a proper fighter and everything we went through was a battle. I can’t fault the compassion and support from the NHS staff. However I am angry. Angry that decades have passed and still people are dying from this disease and yet treatment options for brain tumours aren’t keeping up-to-date with innovations in other cancers.
Dan Leavey
April 2023
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 Brooke’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
Together we will find a cure