*UPDATE*

Hello, and thank you for landing on our JustGiving page.

It’s just over nine months since Stuart was diagnosed with a grade 4 glioblastoma brain tumour (GBM) - we will be updating this page regularly for all of his wonderful supporters.

Because of the incredible generosity of friends, family and people we have never met £85,000 has been raised through JustGiving donations, a raffle, and lots of sponsored activities. We are so overwhelmed with emotion typing this out, its just amazing - with those funds we have been able to press on with the treatment plans in Germany (details on how we got here below in the original message). At the beginning of September Stuart had the first four of his vaccines, we then went again in October. The second trip wasn't without its dramas and Stuart had to have life saving treatment in hospital for a week due to swelling caused by the tumour.

Alongside the ongoing costs of monthly visits to Germany as well as the monthly supplement/offlabel medication prgramme, the incredible team in Germany have identified two targeted medications that will work against the specific mutations and block pathways better than the generic chemotherapy - the DNA/RNA sequencing they carried out is next level. Getting that news was like a dream come true. These medications are available on the NHS for other types of cancers but sadly not for brain tumours - so again it has become our mission to try to raise further funds to enable him to be able to get these treatments which is why the target has increased. These medications alongside the vaccines in Germany mean his chances of survival are far greater than we ever could have imagined.

In July we were given the news after the latest scans that the current chemotherapy is potentially not working, not exactly a surprise given that this type of tumour can become chemo resistant but still a devastating blow – however two of the top neuro radiologists were adamant that what was seen on the scan is pseudo progression so they wanted to give this chemo two last shots before re-scanning. The next scan heartbreakingly showed progression so the treatment plan needed to change. His amazing Consultant has teamed up with an Oncologist in America and put together a plan - you guessed it though, the chosen medications are available on the NHS for other cancers but not for GBM so the next line of treatment will cost us approx £6000+ per month. Its tragic when life and survival comes down to money

We have had endless discussions about how on earth we would fund all of this – we know this is a big challenge and scary costs but we always get told not to let our pride stop access to life saving treatments.

Like most people, we don’t have the resources to do this alone, and we have been completely astounded by the amazing help we have received so far during what is probably the worst time to be fundraising with everything else that is going on across the planet and with the world only just emerging from a global pandemic.

We have asked each other many times why someone would donate to this cause rather than any other charity and we continue to have sleepless nights grappling with the idea of asking for help, let alone asking for even more help but if we don’t give you an update with the latest on this journey, how will you know that we still need your help.

Stu has been struggling with intense headaches and has had to rest most of the time, this path is definitely not a straight forward one, it has so many twists and turns that we sometimes struggle to keep up with the changes - we are so close to going to finding out if the treatment from CeGat is working because of all of you and that is giving us so much hope. Whilst Stu has been resting we have been building the website and we are looking forward to it going live so that it can help others who find themselves in a similar situation.

We know that so many people have already donated, we can’t tell you the tears that we have shed just thinking how kind everyone has been and we hope that those of you who have already donated won’t mind us reaching out again – there could be other ways you can help – by sharing this story in case someone you know might be able to donate or someone somewhere might want to take up a fundraising challenge. The power of our community and social media is incredible - we think perhaps because people try to imagine what it would be like if their loved one was suddenly faced with this.

We, along withn our familes are so very grateful for your support. Please donate if you can (that old cliche that every penny counts is 100% true) and if not we would love for you to share this story and page with as many people as you can in the hope that someone somewhere can help.

With love, Esther and Stu xx

[photo from Stu's recent 40th birthday - Oobaloos Photography]

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Original message:

On January 22nd Stuart was diagnosed with a grade 4 glioblastoma brain tumour (GBM), that was the day our lives changed forever. For those who haven’t heard of it before (we hadn’t either) it’s an aggressive cancerous brain tumour which we have been told by his NHS medical team is incurable. Life has become before GBM and after GBM and feels like we are living moment to moment. But within all of the darkness we have found light. ALL OF YOU have brought us light.

Along with our families and close friends, we researched and connected with many patients and caregivers in similar situations and there ARE other treatment options available - treatments that have put other GBM patients into remission, they are just not in the UK and the financial cost is HIGH but we are determined. Typically the prognosis is between 8 and 18 months but Stu has always refused to hear the prognosis. And there’s no way having only found each other a year ago after a lifetime of searching that we can let that prediction come true, we promised each other we’d leave no stone unturned.

We’ve worked tirelessly reading all of the books available, radically changing diets, working with private and integrative clinics and therapists to tailor make a treatment protocol personalised specifically for Stuart. That in itself is expensive each month but wouldn’t you do everything possible to save your loved one?

HOPE is hugely important to us. When we were told Stuart’s type of cancer was incurable it brought indescribable pain - it’s not something I ever want to hear about a loved one again having been told it about my father before and we certainly weren’t expecting it for a 39 year old fit and healthy man. But when we thought all hope was lost our amazing friends started fundraising for us - initially to help us pay the bills whilst we couldn’t work like we normally would but that quickly changed into crowdfunding so that Stu can access vital treatment not available on the NHS.

Via JustGiving - the generosity of family, friends, our local community and people we haven’t met yet £59,000 has been raised so far which has left us speechless plus a further £20,000 through amazing sponsored activities by our friends and families - We are hoping to raise the rest of our target to help save Stuart with a treatment at a pioneering centre abroad called CeGat.

Whilst we know that the financial cost is HIGH for the treatment in Germany and targeted therapies specific to Stuarts genetic mutuations which cannot be accessed through the NHS, much more than we are trying to raise at the moment, the chance to spend more time together building our family is what keeps us going. Just 12% of people with GBM become long term survivors (+5 years), that’s with NHS standard of care treatment (surgery, radiotherapy, chemotherapy) - JUST 12% - Stu’s diagnosis was operable but whilst waiting for more news on the treatment plan it grew into the midline of his brain and became inoperable which drastically reduced his prognosis - however with everything we are doing which is above and beyond the standard of care available here, why can’t Stu be one of the ones who makes it?

The DNA sequencing of Stuarts tumour and blood sample have been completed by CeGat. Understanding it’s exact DNA means that Stuart’s medical team will advise us this week on what innovative and targeted treatment options are available from across the world and we have had confirmation that the design of the groundbreaking personalised neopeptide vaccine to train his T-cells, essentially his immune system, to attack and destroy the now identifiable specific peptides / cancer cells is possible and already underway. These treatments, whilst expensive, really are the only chance we have to try to keep us together for years to come.

We had a hiccup with the original crowdfunding page which has meant that we’ve had to start from scratch to raise the remaining target (the money donated so far is safe) - The original page is available to view, there is lots more information about our story from the perspective of our friends, our whirlwind wedding organised in under 36 hours (wedding video at the bottom of the page) and our IVF journey (we had planned to start a family before GBM and this has made us even more determined), you can also see the hundreds of well wishes and generous donations that we are eternally grateful for.

The facts about survival post diagnosis are absolutely shocking:

- Brain tumours are the biggest cancer killer of children and adults under 40

- Over 12,000 people are diagnosed each year with a primary brain tumour, including 500 children and young people – that's 33 people every day

- Over 5,300 people lose their lives to a brain tumour each year

- Brain tumours reduce life expectancy by on average 27 years – the highest of any cancer

- Just 12% of adults survive for five years after diagnosis

- Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £700m is spent on cancer research in the UK every year, yet less than 3% is spent on brain tumours

Raising awareness is key to us, Stuart’s determined to give back and to beat the statistics - we are building a website to spread the word, to help other families who find themselves in this situation to find the information needed at a truly heartbreaking and stressful time, information that we wish had been more readily available at the beginning of this journey.

We would love nothing more than to raise our family together and go on to help other families in our situation. We would appreciate it so much if you could SHARE SHARE SHARE this page so we can reach as many people as possible and give Stuart the best chance at becoming one of the 12% and building awareness so that that percentage increases - it shouldn’t be about money, and no one ever imagines the treatment they need not being available on our wonderful NHS but for us this situation is very very real, all donations will go towards life saving treatment to keep our family together and give Stu the best shot at beating this heartbreaking disease.

From the moment we found out that Stuart was so ill we have needed to have HOPE. Your kindness, messages, support and prayers are building up that hope for us. We appreciate you reading this and anything you can do to help us no matter how big or small.

Thank you so much.

Lots of love, Stuart and Esther ❤️

WEDDING VIDEO -

Original JustGIving page - https://www.justgiving.com/crowdfunding/stuart-esther1

BBC INTERVIEW WITH STEVE KNIBBS -

DAILY MIRROR - https://www.mirror.co.uk/news/uk-news/groom-brain-tumour-organises-whole-24046799