This is for our beautiful, gentle, loving daughter Lisa.
In February this year she had a series of catatonic seizures . As lockdown began, our world fell apart. The resultant craniotomy in March revealed a grade IV multifocal Glioblastoma (GBM) Left occipital, left parietal and left thalamus. The most lethal of all brain cancers, this diagnosis comes with a median life expectancy of 12-18 months. Lisa is only 39 and our granddaughter, Ava, is just 7 years old. We have never known such pain and terror.
I am devastated to say that the ensuing SOC daily radio/chemotherapy did not work. On August 28th Lisa had second surgery to remove as much as possible of the second enhancing tumour which continued to grow despite the aggressive treatment she had. It cannot be completely removed because of the risk of causing life changing neurological deficits. Without further treatment, this insidious disease will continue to spread through her brain, destroying healthy cells and the beautiful person we know. She is being really brave but time is not on our side.
The NHS will now only offer palliative care. We want to turn to one of the German clinics who offer immunotherapy at a cost of £100k in the first year. In contrast to chemotherapy, the focus is the manufacture of a personalised vaccine from blood/tumour antigens which will strengthen the body’s immune system, helping it to identify and attack the cancer cells. By comparison, dendritic cell treatment in this country is in its infancy and costs £250,000, which is financially out of reach. We feel it is our only hope.
It’s a big ask but sadly we cannot do this on our own. We know it is a particularly bad time with the fallout from the Covid-19 pandemic but if anyone feels they can help us raise the money to support Lisa’s fight for life, we would appreciate anything, no matter how large or small. Our much loved daughter has so much to live for. Her one wish is to see her daughter reach her teenage years. There are some long term survivors of this devastating disease but no real understanding of why. We have to believe she will be one of them.
2020 was going to be a good year for us, we had hoped. Against the odds I had made a good recovery from oesophageal cancer last year. Lisa, her boyfriend and Ava moved to a new home at the beginning of January. Lisa’s brother, Simon, and girlfriend Emma expecting a baby boy in June. We were starting to plan our family holidays. Then the nightmare began.
On January 13, after a day at work, Lisa had what was dismissed by the medics as a ‘vacant episode’. Not long home she suddenly glazed over, became confused and couldn’t articulate what she wanted to say. By the time the paramedics got her to hospital, cognition had returned but she had a violent headache and nausea. After 5 hours and 2 CT scans, she was discharged. Her GP thought it might have been an aura migraine, so with no further action on the medical front, life resumed as normal after a few days.
On February 25, lunchtime, we had a call from her office to say that Lisa had had 2 catatonic seizures. The paramedics were there. We rushed to the hospital and waited as each ambulance drove in. Eventually she arrived. This time incognitive, flat out, eyes red and staring. She had had 2 further seizures in the ambulance. She was taken into resusc. Eventually she came round and thank god she could speak, if rather confused. Same massive headache and nausea. This time an MRI was done the next day. Results, we were told, showed a supratentorial tumour, low grade, benign. Lisa’s case would be transferred to the regional cancer centre. She was discharged on epilepsy meds.
Two weeks later the consultant neurosurgeon told us there were 3 tumours, not one, and unlikely benign. A craniotomy to biopsy the main enhancing tumour was scheduled for March 23. And then came the bombshell that turned our lives upside down. The worst diagnosis imaginable.
How does anyone tell a patient they may only have a year and a bit to live? Especially a young person with their whole life ahead of them. Lisa and I have always had a very strong bond. When I was ill, I sometimes wondered how we would handle the final goodbye, should it come to that. Never in a million years did I imagine that in just one year’s time I would be facing the prospect of life without her. Not the other way round. I absolutely cannot imagine it. As any parent will know, it feels unbearably cruel. And for her and her little girl, just soul destroying.
Following surgery, Lisa completed standard of care daily radio/chemotherapy on 5/6. She tolerated it well. The plan was then a further 6 months temozolomide. We were shocked, however, to be told that the follow up MRI was showing new growth. Despite the aggressive NHS treatment, she had had + a protocol of repurposed drugs and various recommended supplements, none of it had stabilised this vile disease. The forward plan fell apart.
Second surgery took place on August 28 to debulk this new growth as much as possible. It seems to have gone well with no overt neurological deficits. It should give us an extra 5 months breathing space, but without further treatment it will just start to grow again.
Nothing is certain and nothing is guaranteed. However, we will strive to do the best with whatever money we raise to find the best treatment option we can, to give Lisa the best quality of life we can, for as long as humanly possible. What we do know is that standard of care alone is not going to beat this terrible disease. With your help the availability of new treatments could literally make the difference between life and imminent death. Thank you for your interest and support.
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- JULIE SINGLEHURST
- michael hills
- Mel Darnell
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