What is one thing you wish you knew before you started treatment?

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. 

I'll hand over to Louise:

George is our middle child, a proud big brother to Isabella who is just 19 months younger, and the adoring younger brother of Jamie. George is funny, bright, kind and determined and as he’s so gorgeous both inside and out he’s been nicknamed ‘Gorgeous George’ since the day he was born on 15th November 2008. 

In April 2021 George suddenly had excruciating headaches that appeared out of nowhere, followed by bouts of vomiting which we were told were migraines. After 3 weeks of taking him to the GP, A&E, the opticians, calling an ambulance and begging for an MRI, George was booked in for an MRI on 29th April at our local hospital. 

We never made it home from hospital that evening. They discovered that George had a 5cm brain tumour, and we were blue-lighted to Addenbrookes hospital to meet the neurosurgery team. Matt wasn’t allowed with us due to Covid restrictions and George and I were both very scared. 

On 5th May 2021, George had his first 10 hour brain surgery. He bounced back, and was home 3 days later – no one could believe it. The team said they had sent the tumour off for testing and we would be called for an appointment to find out what would happen next. 

On 19th May 2021, we were told that at just 12 years old, George had a Glioblastoma brain tumour. A word we had never, ever heard of but one that would devastate our family forever. We were told that they were unusual in children, but known as the ‘terminator’ tumour in adults. There were no survivors and that we should go and make some memories as his life expectancy was around 12 months. Whilst we were told this George had been asked to sit outside the door, and was texting me saying he was scared.  

Our lives fell apart. We are a close knit family, and George is a huge part of that. He’s not only adored as a son… but as a brother, a grandson, a nephew, a cousin and also an amazingly loyal and kind friend. How could we even begin to imagine life without him? It’s an unbearable thought.

George endured a gruelling 6 weeks cycle of chemotherapy and radiotherapy to try and hold the Grade 4, and stage 4 brain tumour at bay. Before we even started this cycle of treatment, and just 5 weeks after surgery, George’s tumour had regrown to full size. They told us it was the most aggressive they had ever known. Thankfully radiotherapy seemed to shrink his tumour and hold it at bay for a couple of months so we could make some memories. Over the next few months George endured more than most of us will ever face, always with a smile on his face and a bravery that we can’t express. Countless MRI’s (around 25), such frequent blood tests that his veins all started collapsing and they couldn’t get blood, various chemo’s, painful immunotherapy injections in Germany and a failed clinical trial in Los Angeles.

We nearly lost him a couple of times and he had to have 3 emergency brain surgeries all lasting around 10 hours, plus a brain surgery for a shunt to be fitted. Whilst all of this was happening we tried to make as many memories as we could and searched for and prayed for a miracle.

On 1st April 2022, we were told there was no more treatment for George and the tumour had spread all over his brain. We had to take our little boy home, faced with the knowledge that we probably didn’t have long left. On 12th April 2022 at 11.45pm our little boy slowly slipped away from this world, surrounded by his loving family.

Louise Fox
Mum of Gorgeous George Fox #Forever13

I wish I’d known about the lack of research so I could have campaigned for change before it affected our family personally.

I also wish I’d known that there were choices and options, always make sure you get a second opinion from someone that is well respected in the medical field. I’ve read lots of stories about surgeons that refused to operate and others that have successfully gone on to operate on people.

Is there something you have learnt through your research about personalised cancer treatment above standard of care that you think everyone should know?

You need to take matters into your own hands, and explore all options. Repurposed drugs, CBD, alternative therapies, clinical trials, immunotherapy and new treatments are all options that could help.

Each Glioblastoma is unique and each one will react differently and could respond differently to treatment.

What did you change in your life to support any medical treatments you got - dietary changes, activity changes, supplements?

We kept George as active as we could, in fact until 9 days before we lost George he walked to a local restaurant. Initially we tried to implement the keto diet and cut out sugar, but because George was 12 years old it made him very miserable.

We kept his diet as healthy as possible, he had plenty of homecooked, non processed food, fruit & veg and we avoided sugar as much as possible but still allowing him treats and keeping a balance. This was important for George for his own happiness and we are glad we followed our own path on this.

What was the most difficult part of your journey and how did you overcome it?

The way in which the news was delivered to us by Addenbrookes hospital was excruciatingly painful, which has been difficult to overcome. It’s hard to pin point any of the journey being more difficult than the rest, because of George being our 12 year old son it was just very difficult to come to terms with. 

Do you have any advice to give about how to successfully fundraise to access personalised treatment options outside of the NHS?

I would say to enlist as much help as you can. It’s important to you as a carer to create memories and spend as much time as possible with your loved one, and you can’t do everything.

I reached out to my closest friends, looked at who had the best social media skills and we created a little ‘dream team’ of fundraisers to help so my time was kept free to look after George.

I created a Go Fund me page 2 days after receiving the news, and tried to make it really personal with photo’s and shared George’s fun, kind personality on there. I sent thank you notes to everyone who donated and did regular updates as to where we were in Georges journey.

Also – remember there is an NHS top up option for treatments such as Avastin and immunotherapy options or other drugs that aren’t normally available on the NHS and could save you money if you pay towards them.

What advice would you give on how to best support a loved one going through brain cancer? 

George was obviously a child, so the key things to us were to keep him feeling as normal as possible as that is all he wanted. He just wanted some time with friends, and would have loved to go back to school full time, we managed to liaise and he attended for 2.5 hours a day for a while when he was well enough.

Keeping things as normal as we possibly could was key for our family and for George.

What was your biggest self-discovery or revelation after you were diagnosed?

On a very personal note, we found that lots of people we barely knew were so happy to help us! There is so much kindness around. Sadly the flip side to that is sometimes the people that you expect to be there for you, aren’t. We tried to think that they just didn’t know how to deal with our sadness so buried their heads in the sand. 

"George showed such strength and bravery throughout the most difficult 11 and a half months. We will never give up the fight against brain tumours in his honour" 

How did you find the strength to go through the treatments?

George showed such unbelievable strength during the treatments on his 11 month journey. He had over 20 MRI’s, 4 brain surgeries (3 tumour debulk / removals and a shunt surgery), 18 painful immunotherapy injections. He was so unbelievably brave we had to stay strong to support him. 

How did you deal with the anxiety that surrounded your diagnosis?

It’s very difficult to think of yourself, or look after yourself when you have a child who you have been told is terminally ill. Particularly if he is 12 years old and you decide not to tell him that he is terminally ill. Your focus is all about your child.

We tried to always keep some level of hope, and walking our dogs helped too. If you can grab any time to look after you as a carer then it’s essential that you stay in good health and try and give yourself some self care.

What did you do to help you meet the challenges of your treatments?

Used alternative therapies to try and overcome some of the toxicities of medicines etc, such as homeopathy. Always tried to factor in fun, family times to keep a smile on George’s face. 

What did others close to you do for you that made a difference?

George’s radiotherapy and chemo was at Addenbrooks hospital which was over a 2 hour round trip, and during this time our friends decided to cook all of our week day meals for us which was AMAZING. It took away that stress, and also meant we could just focus on George and our family and supporting him. 

Did you join a support group? If so, how did it help? And would you be happy to recommend/share the link?

We joined several Facebook groups, Glioblastoma UK, Brain Tumour Charity, Strength in numbers, Glioblastoma survivors and thrivers. We wanted to leave no stone unturned in our quest to help our little boy. 

With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?

I would always take second opinions on everything, there are so many different medical views out there. 

What three things would you tell a person who just yesterday learned of their diagnosis?

1. Never give up HOPE

2. Get a second opinion where you can

3. Network and connect with people in the same position as you – they will be your biggest support

Were there any particular blogs, organisations, books, websites, journal articles, or people who were especially helpful with support and/or information?

Cegat
Iozk
Patrice Surley
Strength in Numbers Facebook group

We found the Brains Trust website to be full of useful information. I read and researched everything I could.

Do you have any tips on how to be successful at fundraising?

Utilise the brain tumour charities, who can help you share your story and raise awareness at the same time. Think about any great events that you are doing, if it's something being in your local community make sure you let your local online papers know as they may cover.  

Build up a relationship if you can with local journalists when they do cover your story, so that you can reach out to them if you have some news to share.