Family celebrates medication milestone – an update
Alexander, 12, now takes dabrafenib tablets at home and his family has been released from the stress of crowdfunding for his treatment.
By Jo Porter
Alexander – September 2024
It’s been nearly two years since the family and friends of 12-year-old Alexander celebrated picking up his first prescription on the NHS.
It had been costing Alexander’s family, from southeast London, £3,700 a month to access dabrafenib as well as a personalised cancer vaccine in Germany – something they could only afford through crowdfunding.
But in April 2024, the combined treatment dabrafenib with trametinib was rolled out on the NHS for children and young people who, like Alexander, who have been diagnosed with a low or high grade glioma with the BRAF V600E mutation.
After weeks of worry and back-and-forth with his clinical team and NHS England, his mum Rhonda found out Alexander was eligible for it – but said she wouldn’t believe it until she had the medication in her hands!
Alexander was diagnosed in 2020 when he was six and his tumour spread to his spine. He was given a 20% chance of survival with standard NHS treatments, and had three surgeries.
Alexander’s angels
Among those who helped Rhonda and family to fundraise was the influencer Ashley Cain. But they were also supported by a group Rhonda nicknamed “Alexander’s Angels”.
Geraldine, Tiff, Faye and Caroline were fellow mums Rhonda has known since they met at baby groups she went to with Alexander and his brother.
Reflecting on that time, Rhonda said: “I had literally collapsed in tears with the sheer weight of what we needed to do.
“Nursing a seven-year-old through two brain surgeries and spinal surgery, I hadn’t slept well for months and the thought of it falling solely on us to raise huge sums of money for life saving treatment was terrifying. I didn’t know if we would make it.
“But the phone rang persistently and when I answered, one of the mums told me to get up and wipe away those tears because we were going to get this money raised, it was going to be ok.
“They never gave up. They fundraised and they kept us going and this has got Alexander to where he is now – in remission.
It was like that moment in a film when you need someone to walk in and save you. You know in real life that doesn’t happen, except this time it did!
I was so happy to share the news with them that we had made it! The NHS had come through and we don’t have to fundraise anymore! It was quite a moment, there were lots and lots of happy tears!”
Rhonda Johns
Seizures, scans and surgery
Alexander had always been “the very definition of healthy” as he loved sports and gave his all, Rhonda said. But in September 2020, he had a seizure. Doctors thought it was a one off, but due to its severity Alexander was booked in for an MRI scan to be certain.
With the pressure of the Covid pandemic on the NHS, his scan was delayed by a month and then the results got mislaid. Eight weeks later – the week before Christmas 2020 – he had another seizure and once at A&E his medical records showed his previous scan results.
He was referred to Kings College Hospital urgently and specialists suspected a slow growing meningioma. They decided to take a wait and watch approach as Covid meant only the most urgent operations were taking place.
Alexander deteriorated and started having constant seizures. Instinctively, Rhonda knew the tumour was growing and begged for surgery to be brought forward. Finally, in March 2021 Alexander had a 10-hour operation to remove the tumour only to discover that it had spread.
Rhonda said: “Only one parent was allowed into hospital, so Alexander’s Dad was at home frantic with worry and I had to take photographs to show him how Xander was doing. Little did I know that later I would need to share those traumatic photos publicly to help raise funds for his treatment.”
Alexander bounced back from surgery and even returned to school part-time, but within weeks his symptoms had returned. The tumour was already growing back.
His second and third operations took place in June 2021. Biopsies showed he actually had an aggressive high grade metastatic brain tumour. Next, he faced six weeks of daily radiotherapy to the whole of his head and spine. With limited treatment options available on the NHS at the time his family was told his chance of survival was only 20%.
Turning 10
Alexander’s parents were terrified of what the future might hold and explored all possible treatments worldwide.
They found a personalised vaccine therapy in Germany and set up a crowdfunding page to help pay for monthly travel costs.
Then they heard about a treatment that had proved successful in clinical trials and the Royal Marsden Hospital was given special dispensation to monitor its use while his family paid for a private prescription for dabrafenib.
In January 2022, just over two years since the tumour was first found and after celebrating his 10th birthday, Alexander’s team used the word ‘remission’ for the first time.
Alexander is now almost back to full health. He goes to school, enjoys going out on his bike with his friends, and has fewer hospital visits.
Nearly two years later, Rhonda says she still can’t put into words what it means to be able to access the treatment available on the NHS.
Rhonda said: “The stress of fundraising for nearly three years almost broke us. I cannot put into words how torturous that was. We are so grateful for the efforts of the scientists, the doctors, NICE and of course The Brain Tumour Charity for ensuring it became available to all children in the UK.
“This new drug is just the tip of the iceberg though. More breakthroughs can be made if there is more funding for research. Survival rates can also be improved because technology is advancing and the UK needs to be at the forefront – especially as brain tumours are our number one cancer killer of children. Our brain tumour children can be saved. They can go on to live a full and happy life, and they deserve a chance at that.”
