Welcome back, this week I have the pleasure of Laura’s mum, Nicola (@shitscaredmum), telling us Laura’s story. Please go and support them.
Laura began her first term at Kings College University in London studying International Relations in September 2018. She’d worked so hard to get her 3 grade A’s and was just getting used to student life when she started to suffer headaches; nothing serious just persistent and annoying headaches.
She went to the GP, who didn’t seem overly concerned and said she should just monitor the situation.
She signed up to join the University Navy Corps and as part of the application needed to pass a medical and an eye test. During the examination the optician recognised abnormalities behind Laura’s eyes and referred her to Moorfields Eye Hospital.
As the ever-diligent student, she first went back to college to do a presentation on Iraq and it was early evening before she made it to hospital. That Doctor didn’t seem particularly concerned either but said he would refer to a Neurologist.
The next day Laura became really sick, with a severe headache and constant vomiting, so her sister and I travelled down to London, arriving late on Tuesday night. We took one look at Laura and took her in a taxi straight to Homerton Hospital.
At 3am she went for a CT scan and an hour later, our lives changed forever as Laura was diagnosed with 2 brain tumours. She had a further MRI scan later that morning and it became apparent that she in fact had at least 6 brain tumours.
So six weeks after we had helped her get settled into her new university accommodation, we had the heart-breaking task of packing up and bringing her home again.
Back in the North West, Laura met with a neurosurgeon and it was decided that surgery needed to take place as soon as possible. The largest tumour was starting to cause seizures and pressure was dangerously high within her skull.
Surgery took place at Salford Royal and although she’d had a major seizure that morning which rendered her unconscious, it went well and Laura made a good recovery from the craniotomy.
A week later, we got the pathology results and the worst possible news; Laura was diagnosed with Diffuse Glioblastoma Multiforme, which is the most aggressive Stage 4 brain cancer.
We were devastated and horrified to find out that the prognosis was so poor with this disease. The median length of survival following diagnosis is 12 to 15 months, with fewer than 3 to 5% of people surviving longer than five years. Without treatment, survival is typically just three months.
As a family we couldn’t believe that our beautiful intelligent girl with so much life ahead of her, was basically facing a death sentence. It’s was just heart breaking.
So following surgery, Laura had a gruelling 6 weeks of radiotherapy and oral chemo, she then got a month off before starting a further 6 months of chemo (5 day each month).
We also added a huge range of supplements and repurposed drugs, anything we can find that has the slightest chance of stalling this disease and giving Laura the chance of a decent life.
In addition, we also looked at other treatments that are still in the experimental phase, specifically immunotherapy treatments in which a personalised immune therapy is made from each patient’s own dendritic cells.
Dendritic cells are a type of immune cell that function to help the body’s immune system recognise and attack tumour cells.
The results of the initial trials are positive and it seems to be extending the overall survival rate for people like Laura. Unfortunately for us, the treatment has yet to be approved by NICE so it’s not available in the U.K and we have to travel to Cologne in Germany roughly every 6 weeks.
We needed to fund the whole treatment for Laura ourselves, it has probably cost us £150,000 so far with additional costs for travel and accommodation. It’s a lot of money for an ordinary family to try to find.
Fast forward to March 2021
Laura is continuing to do really well, she’s in her second year at Manchester University studying Politics, Philosophy and Economics and if it wasn’t for Covid 19 she’d be back and living in halls. We still need to travel to Germany every six weeks which continues to be very stressful during a pandemic!
Unfortunately the scan she had earlier this month showed a new area of concern in the periphery of Laura’s brain and she’s now facing the prospect of a further surgery to find out what the new growth is.
It’s tough to be facing this for a second time but we’re keeping positive and hoping that it proves to be nothing too sinister.
Thank you so much for reading Shitscaredmum blog post. Please go and support both of them by following her on social media. Let this be a lesson we will do anything in our power to live, that’s why you should too.