Last week, Robyn Cooke, one of our Friends in the Fight, shared this beautiful tribute with us about her friend Victoria, a Cystic Fibrosis Warrior. Check out the beautiful piece, Robyn wrote for Victoria, below!
For Victoria
Victoria Patricia Dorothea Longthorp-Fernandez was born on the 16th of November 2001, to her mother, Jill. She had two elder sisters, Sophia and Leya.
Victoria was diagnosed with Cystic Fibrosis (Gene Mutation: Phe508del Homozygous) as a foetus. Cystic fibrosis is a genetic condition that primarily impacts the lungs and the pancreas, causing the mucus in the body to be abnormally thick and sticky, leading to breathing difficulties and infections. Growing up she was always in and out of hospital for various treatments, these became more frequent the older she got.
Regardless of her CF, Victoria always remained a bright, positive, creative and funny girl. She was kind and caring and very intelligent.
In March 2018, Victoria was diagnosed with Germ Cell Cancer. Doctors found a tumour in her abdomen. Victoria underwent 10 rounds of chemo (losing all her hair), and in June 2018 her cancer levels had gone from 65,000 to 131!
This is amazing for any cancer patient, let alone someone who is battling another serious disease at the same time! Everything was looking positive but then in October 2018, doctors delivered the devastating news that the cancer was back.
Victoria took this all in her stride and focused on getting rid of her cancer and moving on, and in November she was faced with either undergoing a very dangerous operation to remove the tumour, or leaving it and spending what time she had left with her family and friends.
Victoria elected to have the operation, and on the 9th of January 2019 the operation went underway. The surgeons first attempted keyhole surgery, however her tumour had grown around her blood vessels and as a result they had to fully cut her open to minimise blood loss. She was in the operating room for 8 hours, and surgeons reported the surgery was a success! After so much worry everyone could breathe a little easier because Victoria was on her way to remission.
Sadly, one week after the operation things took a turn for the worse and Victoria was diagnosed with pneumonia. Due to her CF, this became very severe and Victoria ended up in an induced coma, completely dependent on life support. Nobody was sure if she would make it or not, but in true Victoria style, after a little over two weeks in a coma she pulled through.
During the entirety of her coma her family had to do physio on Victoria to bring mucus up from her lungs, and also changed her position due to oxygen not entering her body. Both of these acts saved her life. In early February of 2019, Victoria was allowed to go home.
In June, Victoria and her family received the news that the cancer wasn’t gone. The operation had come too late and it had already spread. By this time, it was over a year that Victoria had been battling both cancer and CF, showing extreme amounts of courage and bravery all throughout her journey.
By this time, doctors weren’t sure what they could do to treat the cancer. Victoria had already undergone a tremendous amount of treatments and her CF was suffering greatly because of it.
Time pushed on and doctors told Victoria that there was nothing they could do apart from make sure she was pain free and comfortable. This was hugely heartbreaking for Victoria, her family and her friends. Victoria had put up such a fight and for so long, and now there was nothing left to do.
For the next few months Victoria focused on getting as fit as possible and alternative treatments. During this time, doctors informed Victoria that she had developed 6 tumours. 5 in her tummy and 1 in her liver, and as a result Victoria was struggling to eat.
The charity “make a wish foundation” helped make her dreams come true and she visited a wolf sanctuary (wolves were her passion!) and she also visited the Eden Project.
Over time she started to develop more pain which became so severe that she was put on extremely strong painkillers that kept her unaware of what was happening around her.
On the 2nd of September at 10:10pm, Victoria passed away at the young age of 17 surrounded by her family and close friends. On her last day she was still being her beautiful self, making people smile and laugh when she was conscious.
Victoria fought extremely hard and showed courage and strength in the face of not only one, but two serious diseases. She refused to let them dictate how she should live her life and continued on with her passions and hobbies. It is for these reasons that we are shaving our heads to raise money and awareness for Cancer Research UK and the CF Trust. We want others to be inspired by Victoria and her journey, just like we were. We believe that everyone should take a page or two out of her book and live life to the fullest, regardless of any struggles. Victoria went bald from chemo, so we’ll go bald in her memory.
We’re shaving our heads on 12th October, roughly 2:30pm. We will live stream on our Instagram @baldheadsforvictoria.
