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Our daughter Alix had a truly a lovely life. Happily married to her soulmate Juan Carlos, and living in Spain, together with their two beautiful children Luna and Izan, in a house that her husband built on the Costa Blanca, just 10 minutes walk from the spectacular Deveses beach.
We loved seeing how happy she was.
Without warning, in December 2016 Alix suddenly started getting crushing headaches. A scan at the local hospital revealed a ‘lesion on her brain’ and she was sent immediately by ambulance to the Regional hospital in Valencia. There, two days later, after a more detailed scan, doctors saw a mandarin-sized tumour with all the hallmarks of a Glioblastoma.
Following a 5 hour surgery on December 23rd 2016, Juan Carlos called us with the awful news that Alix was indeed suffering from a malignant Glioblastoma (GBM 4). The surgeons had done what they could, but this type of cancer puts out tendrils that are almost impossible to get at because they invade critical structures of the brain.
Glioblastoma is the most common type of brain tumour. The average survival rate is 12-15 months, and the only available treatment – chemotherapy plus radiation – is likely to extend life by only 3 months.
Kathy and I put everything else on hold and flew out to Spain to be with our daughter and her family. Although Alix had access to everything that could be done to treat her Glioblastoma, her life ended on September 3rd, 2017 just nine months after her diagnosis. She was only 44 years old.
I cannot even begin to tell you the emotional journey that Alix and all of us went through over those nine months. Her quality of life steadily and inexorably declined until her body just basically shut down. Many of you reading this will have experienced one or more life-altering tragedies and so you will know what I am talking about.
Alix always called me Daddy and she was always my little girl. And when she was growing up and things didn’t go quite right, Daddy went in to fix it. Daddies are supposed to be able to fix things for their daughters and I could not fix this – no matter how hard I tried.
Everyone kept up a brave exterior and as you can see from the pictures, no one was more positive than Alix as she bravely bore every drug, every radiation session – ultimately to no avail. The tumour rapidly regrew to something even larger and further surgery was impossible.
By May 2017, Alix was starting to lose control of her muscles and her mobility, and the treatment plan switched to palliative care – making sure that whatever happened she must suffer no pain.
She spent all of her time at home, being looked after by her truly amazing husband who did everything he possibly could to make life normal and cheerful for her and their children.
As you can imagine we researched every possible option, but there is not much to chose from since only about 2% of cancer research funding goes into brain tumour research. The only available drug that doctors have to offer – Temozolomide – is 50 years old and does little but postpone the inevitable.
However, in my research I found that a new class of treatments – Immunotherapy – is rapidly becoming a reality and offering real hope. Huge strides have been made in the past 5 years.
Immunotherapy uses our immune system to fight cancer – it works by helping the immune system recognise and attack cancer cells. For example, one type of treatment involves artificially creating antibodies keyed to a specific type of cancer in a patient. They are then injected back into the patient whose immune system replicates them millions of times and sends them out to target and kill the cancer.
This is hugely exciting because it can theoretically be used against all cancers, from things like leukaemia (a blood borne cancer) to solid tumours like breast cancer, lung cancer and brain cancer.
So I decided that even though I couldn’t help my daughter in her losing battle with an aggressively malignant brain tumour, that I could help to do something for other parents and husbands and wives and children who are afflicted by one of these horrible diseases or who are caring for someone they love.
We have decided to support Cancer Research UK’s work into brain cancer with the funds we raise. They are the world’s leading cancer charity dedicated to saving lives through research. They are trusted experts and we’re confident in their approach to funding cancer research projects of only the highest calibre.
Please will you add your donation in memory of Alix and help to make Alix’s Legacy something really special in the fight against Glioblastoma.
Humphrey Gervais (Daddy to Alix)