Alexander, 10, can now have treatment at home and his family can close their crowdfunding page.
By Jo Porter
The family and friends of 10-year-old Alexander from southeast London are celebrating after he picked up his first dabrafenib prescription on the NHS having previously paid for it for two-and-a-half years.
It was costing Alexander’s family £3,700 a month to access dabrafenib – something they could only afford through crowdfunding – as well as a personalised cancer vaccine in Germany.
But in April, the combined treatment dabrafenib with trametinib was rolled out on the NHS for those children and young people 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 treatment team and NHS England, his mum Rhonda found out Alexander was eligible but said she wouldn’t believe it until she had the medication in her hands! Now that moment has arrived, and Rhonda wants to thank all those who contributed to raising the money needed to pay for this treatment.
Alexander’s angels and dabrafenib
Among them is the influencer Ashley Cain, who threw his weight behind the fundraising campaign after Alexander was diagnosed with a high grade glioma that had spread to his spine in 2020. He was given a 20% chance of survival with standard NHS treatments.
Rhonda was also helped by some incredibly special fellow mums who she first met at baby groups soon after Alexander and his brother were born. She calls them “Alexander’s Angels.”
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 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”
“Then 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!
Mum Rhonda Johns
“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. That was three years ago, and they never gave up. They fundraised and they kept us going and this has got Alexander to where he is now – in remission, alive having celebrated his 10th birthday last December. 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!”
Seizures, scans and surgery
Alexander had always been “the very definition of healthy” as he loved sports and gave his all. But in September 2020, when Alexander was just six, he had his first 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 brain scan was delayed by a month and then the results somehow got mislaid. Eight weeks later and the week before Christmas 2020, he had another seizure and when he arrived at A&E his previous scan results were found.
An urgent referral to Kings College Hospital followed where specialists suspected a slow growing (low grade) meningioma brain tumour and decided to take a wait and watch approach as Covid meant surgeries were being cancelled.
Alexander deteriorated and started having constant seizures. Rhonda instinctively knew the tumour was growing and begged for surgery to be brought forward but they were forced to wait until March 2021 when Alexander had a 10-hour operation to remove the tumour and they discovered that it had spread to his spine.
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 growing back already.
His second and third operations took place in June 2021, and 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 hope in Germany and set up a crowdfunding page to help pay for monthly flights there for treatment with a personalised vaccine.
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, 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 with his friends, enjoys his life again and only takes tablets so has fewer hospital visits.
Rhonda wrote on the Go Fund Me page that’s no longer needed: “I remember trying to find the words to start this page and write the introduction with tears streaming down my face. It all felt impossible. Alexander was so little, so unwell and we had so much money to find.
We didn’t know if we were going to make it. Here I am writing again with tears streaming down my face. This time they are grateful and relieved tears, overwhelmed by knowing that you and your donations made it all possible. Alexander just could not have accessed the personalised cancer treatment in Germany or the medication in time without your help.
“We could not have done it alone. The level of gratitude we feel for you is so big that I think even Shakespeare would struggle to find the words to convey what we feel in our hearts. So we simply say…You and your astonishing kindness directly saved Alexander’s life. THANK YOU.”
