Hope's Ongoing Treatment

So here we are again.....

Appealing to the public for further help to enable my sister to carry on fighting for her life.

I first wrote to you all back in the December of 2018 when our worlds came shattering down around us as Hope was told that her 3 years in remission had come to an end and that the soft tissue sarcoma had metastasised and found it's way to her lungs, all 17 tumours of it.

Hope was offered one type of chemo as a solution and was then sent on her way, however this chemo was never going to be a solution as she'd been given it back in 2014 and it hadn't worked then either. So to summarise, there actually was not a UK solution.

Hope bravely declined the chemo and after what felt like a millisecond of moping she was in full combat mode.

Mum, dad, Sean, Hope and I dug into the deepest realms of the Internet and after a failed and very depressing New York trip where we were told the same thing as we'd been told in the UK - "nothing to offer except the chemo that was unlikely to work" we headed back home with our hearts broken and our heads in our hands.

Then one day my mum stumbled upon a research paper online about a gene targeted drug that had treated another patient with the exact same rare form of sarcoma as Hope and that the patient was not only alive years later, she also had no evidence of disease.

This was the route we decided we needed to go down so I found the name and email address of the drugs inventor and I made contact with her on 7th January 2019.

Dr. Erlinda Gordon replied a day later and wanted to help us so Hope and I booked our flights and a couple of days later we were sat in front of her at the Sarcoma Oncology Centre in Santa Monica.

Dr Gordon was amazing, along with Dr.Chawla, founder of the Sarcoma oncology centre - they were and continue to be a breathe of fresh air and during our initial meeting they gave us so much hope.

Unfortunately, Dr Gordon's charitable trust, The Aveni Foundation did not have the funding required to make one batch of DeltaRex-G for a Phase 2 study - essentially the exact thing we were solely relying on to keep Hope alive.

We needed $760,000 just to get the drug manufactured, tested and approved. This would be enough money to make 6 batches of DeltaRex-G, serving 6 patients. Manufacturing just one batch was not an option as per the FDAs regulations for clinical trials.

In addition to the drug money we needed enough to cover day to day living costs, travel, long term accommodation and all the other additional medical costs; Blood tests, CT scans, MRI's, ECG's, X-Rays and so on, and as most of you know nothing medical comes cheap in America.

Hopes amazing work place, Marex Spectron held a charity day in Hopes honour which they called "Broking for Hope" and raised an incredible $1.5 Million in one day.

The funds required to manufacture the drugs were then wired over to the Aveni Foundation and we started the long wait to get the drug manufactured, tested and approved for import into the USA.

What happened next was both unprecedented and incredible.

Hope was put in touch with a marine biologist named Stefan. He was based in Germany and had a passion for helping cancer patients heal without the use of traditional cancer drugs such as chemotherapy spurred along by the loss of his dear sister who had cancer.

Whilst Hope was sitting around in Santa Monica waiting for the DeltaRex G to be manufactured she got to work by handing her life over to Stefan and listening to his every word. He was a beacon of light in a time of panic and despair.

Hope started having regular CT scans to monitor what was happening in her lungs and to our astonishment everything started shrinking instead of growing.

Hope focused all of her attentions on following Stefans regime. It didn't come cheap and it required determination, courage and sacrifice but it was working and thanks to Hopes work she was able to commit herself to what it took not only mentally but financially too.

Weekly colonics, vitamin c infusions, daily enemas, daily ozone saunas, accupunture, vegan diet, daily canabis oil intake and a cocktail of 80 odd pills a day, these are just some of the things Hope had to commit herself to.

Whilst waiting for the DeltaRex-G to be manufactured Hope managed to get herself a stable disease status and was absolutely thriving. The next decision wasn't made lightly however after 10 months in Los Angeles Hope made the decision to come home and continue on the path that was working so well. Hopes batch of DeltaRex-G was held for her for future use should she need it and home she came.

The remaining 5 batches were used on other patients in need as intended.

Hopes life resumed to a new normal. Nowhere near normal by our standards but Hope got on with it, taking it all in her stride and leaving everyone around her in awe of her resilience.

Fast forward 4 years, besides a few minor set backs along the way - the odd bit of growth here and there, December 2022 arrived and Hope had a bad scan. This bad scan was followed by another bad scan, bad enough to be sent home from the Royal Brompton to Ramsden Heath to get packing up her and Sean's home and entire lives. Hopes UK oncologist had advised Hope to get to Santa Monica urgently as they would be able to offer her the Sant Protocol which is not available in the UK and involves two parts immunotherapy and one part low dose chemo.

Within 5 days we had emptied an entire home, packed all of Hope and Sean's life away, booked flights, put their house on the market to rent, sold their two cars, sorted visas and admin and they said their goodbyes to loved ones. The emotional burden this weighed on all of us is still too raw to discuss.

Hope was now in the thick of it but our saving grace in this nightmare was the fact that we had the remainder of Hopes fund to get the ball rolling immediately.

On February 6th of this year we flew to America to get the show on the road. Hope and Sean uprooting their lives, Alex Ava and I joining for moral support and my mum and dad following behind a week later once longterm accommodation was secured.

Hopes new life saving medical regime upped its financial strain more than a few notches and her new American cost of living went from in the region of £3k a month to upwards of $20,000 a month.

Add a couple of $50,000 hospital stays and $50,000 worth of unexpected radio therapy to the balance sheet in addition to monthly rent and you'll understand why the time has come to reach out for help once more.

Hope is currently in Santa Monica California, undergoing the Sant protocol clinical trial and has just had her first dose of DeltaRex-G.

Whilst Hope is currently doing well she has had her fair share of scares since February and her lungs have taken a beating, despite all this her determination to live is as unwavered as ever and she continues to make us all so proud.

Reaching out for help is not something that Hope is thrilled to have to do, nor would anyone be, but her survival comes at a hefty cost and we are therefore asking for your help in sharing, donating or fundraising for Hopes cause once more.

Hope is fortunate enough to have a work insurance policy that covers her salary whilst she is absent from work which thankfully covers the financial commitments she has back home and a fair share of her personal expenses whilst in Santa Monica.

However If the rate of medical bills continue as they have been for the past 7 months then we anticipate the fund being empty within the next 6 months grinding this all to a halt.

We ask that you share Hopes story far and wide to help her continue her fight.

Love,

Nancy x