On 28th December 2015 our lives changed. Our eldest son Alex, aged 28, was rushed unconscious to hospital in Berlin. He was diagnosed with a grade 4 glioblastoma multiforme (GBM), the most agressive form of brain tumour. He had emergency surgery to remove part of the tumour and was then put into an induced coma for two and half weeks before a second operation to excise the rest of the tumour.
This photo was taken at that time with Digby:
After a month in hospital Alex was flown home and had 6 weeks of radiotherapy in our local hospital in Guildford.
Very sadly the next MRI scan showed that the tumour had already regrown to more than half of its orginal size.
Because Alex had complete confidence in his neurosurgeons in Berlin, on 26th May this team operated for a third time and removed 99% of the new tumour.
This is Alex with Tatiana, his fiancee, in hospital the day before his third operation:
Alex recuperated in Berlin. Tatiana, and his brothers, Digby and Maxim, have all played a critical role in his recovery.
Amazingly he was out of ICU in less than 24 hours and out of hospital in 5 days - back to his normal self.
Since his diagnosis, Alex has thoroughly researched every available treatment for his type of brain tumour.
His abnormal liver tests meant it was risky for him to have long term chemotherapy. Immunotherapy is his only other option.
Immunotherapy is a relatively new form of treatment that reawakens the immune system so it can fight cancer. This is done through vaccines and infusions specially matched to the DNA of the tumour.
Immunotherapy is not yet available for brain cancer in the UK but is available at various clinics in Germany. Sadly Alex does not have the luxury of time.
In July Alex began a course of immunotherapy at a clinic south of Stuttgart. Here the tumour tissue goes through extensive testing to identify its gene structure. These tests identified a growth hormone gene, EGFRviii, which the doctors were very much hoping to find. This is hugely exciting because, according to the pathologist, Alex's tumour tissue has the highest expression of this gene they've ever seen. This is treatable, and gives him the very best chance of extending his life expectancy.
In Digby's words, "This is like winning the Lottery!"
Alex has already had a series of the vaccine targeted at EGFRviii (known as the Magic Bullet) plus two others, all matched to the DNA of his tumour, with very few side effects.
Inevitably the immunotherapy vaccines are extremely expensive. As a family we have already spent £150,000 on the initial stages of the treatment. Estimates from the clinic suggest we need another £200,000 to complete the next year of therapy.
So many friends have been incredibly supportive and keen to help; so we have set up this fundraising page.
Our target is to raise £200,000.
How is Alex coping with all this? Right now he is doing his very best to lead a normal life.
For those of you who don't know, he and his brother Digby are self-employed music producers, currently working in Berlin. Music is their absolute passion. Amazingly, just eight months after waking from his coma, Alex is back with Digby playing live gigs again. They're travelling all round Europe including London, Switzerland, Sardinia and Ibiza.
We desperately hope that the immunotherapy treatment will give Alex the opportunity to extend his life and continue to live it to the full. He is on such amazing form - so strong, open and positive.
This photo of Alex was taken in the middle of August in Frensham:
Thank you, so much, for your support.