Viva Verity

Hi, my name is Lydia, and I'm fundraising for my daughter Verity, who has been living with an extremely rare cancer for 8 years, a sarcoma of the abdomen called Desmoplastic Small Round Cell Tumour, or DSRCT. She's 25 now and it all began when she was 17. At that stage, her cancer looked very scrambled and was wrapped around an ovary, so she was misdiagnosed with carcinoma of the ovary and had the wrong chemotherapy. When it recurred in 2019, a new gene test was available which diagnosed the DSRCT. It was obviously a big shock. It is such a rare disease that there isn't a treatment protocol for it, so the best fit chemo was to follow the regime for Ewings Sarcoma. She had 6 months of this which led into lockdown, so she went home to hide away from the potential of getting covid.

She began to resume as normal a life as she could for about 18 months, until December 2021 when it recurred. This time her consultants in Bristol began talks with consultants at The Royal Marsden in Sutton, to organise her trialling a drug called ramuciramib, which she stayed on for 2 years. She then stayed with the Royal Marsden and had cabozantinib, which brings us almost up to date. They've decided now that there might be a better treatment option that could attack the cancer a bit more, rather then take the 'living with cancer' approach. So she came off cabozantinib 2 weeks ago.

Unfortunately, things have taken a turn for the worse as she's come into hospital with acute pancreatitis. It's the worst pain and the most unwell I've seen her in the whole 8 years.

Alongside this, her liver isn't doing too well. The left hand side is a bit withered and the ducts aren't draining very well so the right hand side is trying to compensate.

We are now at the stage where difficult conversations are having to be had about end of life wishes and the fact that if her liver doesn't heal, more treatment might not be an option because the liver won't cope with it. Unfortunately her consultant doesn't think it's likely that her liver will heal, and has given her weeks or months left to live. This has been shocking and unbelievably hard to hear. In the last few days, having been given steroids and a blood transfusion, she's picked up in energy and the ability to eat, drink, laugh and move about. So it's pretty hard to believe that underneath it all her liver is acting in this insidious way.

So I'm now trying to raise funds to either have the option of finding any treatment if there is anything available to help support her liver and heal it enough to tolerate a monoclonal antibody treatment that has been talked about, as well as having enough for enriching experiences for Verity, Luke and Miley, and anyone else she wants to join in, to make the life she has left enhanced and joyous.

This is heartbreaking for me to write as my love for my precious child could not be any bigger. She is a fierce, brave, courageous and compassionate young woman who deserves to live life to the full, as we would all want for our children.

I called her Verity, it's from the Latin word meaning 'truth', and boy does that suit her.

Thank you all if you've read this far and please help if you can. Much appreciated ❤️