Stuart's story is sadly not unique - there is estimated to be over 300,000 people worldwide diagnosed with a primary brain or spinal tumour. Over the ten months and of course beyond we connected with many patients and caregivers through different forums each trying to find answers.
This website has grown exponentially since starting it all those months ago and as you know by now it was Stuart's wish to help as many people as possible and so we want to include as many Other Stories from patients and caregivers from all over the world as possible to give hope and hindsight.
Laura was eighteen and in her first term at university, studying International Relations at Kings College, London when she was diagnosed.
Her Mum Nicola had researched all the various possibilities and they knew that glioblastoma was the very last diagnosis they wanted to hear.
"Right from the beginning we looked to find other options that might be available. From our own research, we knew that we needed to save the tumour tissue for future immunotherapy purposes. However, tumours can be diffuse and not especially solid on removal and the most important task for the surgeon is the safe removal of the tumour and subsequent pressure in the brain rather than the storage of any removed matter"
The Nuttal's have been so helpful to us and have become lovely friends. They do so much for the brain tumour community and constantly spread awareness.
I first met Louise Fox through our shared facebook group Strength in Numbers. What I noticed in the group is the tenacity of patients and caregivers and also how successful Louise and her family were at reaching out to get the answers to questions we as caregivers have all found ourselves asking - and for raising a staggering amount of crowdfunding in order to get Gorgeous George innovative treatment. George was just 12 when he was diagnosed with GBM and went through 12 months of treatment.
I asked Louise to tell their story, to be able to share the information they gathered to give hope and hindsight to other families who find themselves in a similar situation.
Click below to read what Louise had to say.
In August 2020 Dave noticed a flicker in his eye which lead him to seek out answers, when a GBM was discovered it was the last thing he and his family were expecting.
Overnight his wife Nicky had to become a carer, researcher and fundraiser to get the best treatment available worldwide for Did.
We first became friends not long after Stu was diagnosed, introduced by Nicola Nuttal in our shared Facebook group Strength in Numbers. We met during Stu's first treatment in Germany. Being part of a supportive community became so important, sharing knowledge, caregivers advice and supporting one another.
I asked Nicky to share Did's story to share the information they gathered. Here is their story.
Michel was diagnosed with grade 4 glioblastoma brain cancer in February 2019 after returning from a family holiday. in Florida He had been experiencing symptoms like pains in the neck and chest, some behaviour issues and falls, but was repeatedly misdiagnosed by the many doctors they sought out.
During the 40 months Michel endured 3 brain surgeries, 2 clinical trials, an immunotherapy study, 4 rounds of chemo, 3 rounds of radiation (targeted, full brain, and spinal) and numerous other tests and procedures.
We found Noelle and Michel's instagram account early on after Stu was diagnosed, following along their journey and seeing what treatment entailed in America gave us hope and there were many times that Noelle messaged to say she was praying for Stu. I always admired the way Noelle spoke about Michel and you can see the love radiate from all of their family photos. She has generously agreed to share their story so that others can find hope and hindsight.
In May 2014 following a grand mal seizure Dave was diagnosed with a grade 2 astrocytoma. After a routine scan in 2015 a new tumour was detected in the central hemisphere of his brain. This time it was a high grade glioblastoma . He was given a prognosis of 3 months without treatment or 6-8 months with treatment. He embarked on 6 weeks concurrent radiotherapy and chemotherapy at the Clatterbridge hospital in Wirral. He then went onto start 6 cycles of chemotherapy over the next six months and explored what else is out there to increase his chances of survival.
Dave is known as one of a small percentage of people living with a GBM for five years or more and has made it his mission to raise awareness.
He has generously agreed to share his story of hope and hindsight.
Coming soon will be more Stories - more beautiful people have very generously agreed to spread their own hope and hindsight and we can't wait to share their Stories with you.
If you'd like to tell yours or your loved ones story and share all the information you have gathered that could be useful to someone else as well as your fundraising links please get in touch using the form below.