The household and mates of 10-year-old Alexander from southeast London are celebrating after he picked up his first dabrafenib prescription on the NHS having beforehand paid for it for two-and-a-half years.
It was costing Alexander’s household £3,700 a month to entry dabrafenib – one thing they may solely afford via crowdfunding – in addition to a personalised most cancers vaccine in Germany.
However in April, the mixed therapy dabrafenib with trametinib was rolled out on the NHS for these youngsters and younger individuals like Alexander who’ve been recognized with a low or excessive grade glioma with the BRAF V600E mutation.
After weeks of fear and back-and-forth along with his therapy workforce and NHS England, his mum Rhonda came upon Alexander was eligible however stated she wouldn’t imagine it till she had the treatment in her arms! Now that second has arrived, and Rhonda needs to thank all those that contributed to elevating the cash wanted to pay for this therapy.
Amongst them is the influencer Ashley Cain, who threw his weight behind the fundraising marketing campaign after Alexander was recognized with a excessive grade glioma that had unfold to his backbone in 2020. He was given a 20% likelihood of survival with customary NHS therapies.
Rhonda was additionally helped by some extremely particular fellow mums who she first met at child teams quickly after Alexander and his brother had been born. She calls them “Alexander’s Angels.”
Reflecting on that point, Rhonda stated: “I had actually collapsed in tears with the sheer weight of what we wanted to do. Nursing a seven-year-old via two mind surgical procedures and spinal surgical procedure, I hadn’t slept for months and the considered it falling solely on us to boost large sums of cash for all times saving therapy was terrifying. I didn’t know if we might make it”
“Then it was like that second in a movie while you want somebody to stroll in and prevent. You realize in actual life that doesn’t occur, besides this time it did!
Mum Rhonda Johns
“The cellphone rang persistently and once I answered, one of many mums informed me to rise up and wipe away these tears as a result of we had been going to get this cash raised, it was going to be okay. That was three years in the past, they usually by no means gave up. They fundraised they usually saved us going and this has bought Alexander to the place he’s now – in remission, alive having celebrated his tenth birthday final December. I used to be so completely happy to share the information with them that we had made it! The NHS had come via and we don’t must fundraise anymore! It was fairly a second, there have been tons and many completely happy tears!”
Seizures, scans and surgical procedure
Alexander had all the time been “the very definition of wholesome” as he cherished sports activities and gave his all. However in September 2020, when Alexander was simply six, he had his first seizure. Docs thought it was a one off, however because of its severity Alexander was booked in for an MRI scan to make certain.
With the stress of the Covid pandemic on the NHS, his mind scan was delayed by a month after which the outcomes someway bought mislaid. Eight weeks later and the week earlier than Christmas 2020, he had one other seizure and when he arrived at A&E his earlier scan outcomes had been discovered.
An pressing referral to Kings Faculty Hospital adopted the place specialists suspected a sluggish rising (low grade) meningioma mind tumour and determined to take a wait and watch strategy as Covid meant surgical procedures had been being cancelled.
Alexander deteriorated and began having fixed seizures. Rhonda instinctively knew the tumour was rising and begged for surgical procedure to be introduced ahead however they had been pressured to attend till March 2021 when Alexander had a 10-hour operation to take away the tumour they usually found that it had unfold to his backbone.
Rhonda stated: “Just one mother or father was allowed into hospital, so Alexander’s Dad was at residence frantic with fear and I needed to take pictures to indicate him how Xander was doing. Little did I do know that later I would wish to share these traumatic images publicly to assist increase funds for his therapy.”
Alexander bounced again from surgical procedure and even returned to high school part-time, however inside weeks his signs had returned. The tumour was rising again already.
His second and third operations passed off in June 2021, and biopsies confirmed he truly had an aggressive excessive grade metastatic mind tumour. Subsequent, he confronted six weeks of day by day radiotherapy to the entire of his head and backbone. With restricted therapy choices obtainable on the NHS on the time his household was informed his likelihood of survival was solely 20%.
Turning 10
Alexander’s dad and mom had been afraid of what the long run may maintain and explored all potential therapies worldwide.
They discovered hope in Germany and arrange a crowdfunding web page to assist pay for month-to-month flights there for therapy with a personalised vaccine.
Then they heard a couple of therapy that had proved profitable in scientific trials and the Royal Marsden Hospital was given particular dispensation to watch its use whereas his household paid for a non-public prescription for dabrafenib.
In January, simply over two years because the tumour was first discovered and after celebrating his tenth birthday, Alexander’s workforce used the phrase ‘remission’ for the primary time.
Alexander is now virtually again to full well being. He goes to high school along with his mates, enjoys his life once more and solely takes tablets so has fewer hospital visits.
Rhonda wrote on the Go Fund Me web page that’s not wanted: “I keep in mind looking for the phrases to begin this web page and write the introduction with tears streaming down my face. All of it felt unattainable. Alexander was so little, so unwell and we had a lot cash to seek out.
We didn’t know if we had been going to make it. Right here I’m writing once more with tears streaming down my face. This time they’re grateful and relieved tears, overwhelmed by figuring out that you just and your donations made all of it potential. Alexander simply couldn’t have accessed the personalised most cancers therapy in Germany or the treatment in time with out your assist.
“We couldn’t have finished it alone. The extent of gratitude we really feel for you is so huge that I believe even Shakespeare would battle to seek out the phrases to convey what we really feel in our hearts. So we merely say…You and your astonishing kindness immediately saved Alexander’s life. THANK YOU.”
