Story

Ruby's 'Live Kindly, Live Loudly' Fund is a Special Named Fund at Children's Cancer and Leukaemia Group raising money for research into T-cell lymphoma and leukaemia in memory of 18-year-old Ruby Fuller. Ruby was 17 years old when diagnosed with T-cell lymphoblastic non-Hodgkins lymphoma (NHL) in 2019, which developed into leukaemia.

Ruby's Mum, Emma, tells her story.

In June 2019, Ruby's face started to appear swollen and she felt tired and achy. The GP thought it was allergies. But after ripping out old carpets, changing her bedding and buying an air purifier, her symptoms only seemed to worsen. After six more GP visits, she was finally referred to hospital for a chest x-ray. That evening we got the devastating news that she had lymphoma, with a large tumour in her chest which was causing her face to swell.

They started Ruby’s induction chemotherapy treatment straight away. But the cancer didn’t respond sufficiently, meaning they had to switch her to more intensive chemo. This meant staying at the Royal Marsden, Sutton, for several weeks while they monitored her for infections, of which there were many (including an emergency transfer to St George’s when she developed sepsis). During this time, she turned 18 and we threw a party for her in the hospital. It wasn’t the 18th birthday she’d imagined, but with the help of her friends and fabulous staff she had a pretty good day – helped by the news that the cancer had responded well to this more intensive chemo.

It was seven weeks before she was well enough to come home for a few days before they started the next round of chemo - with a view to then having a donor stem cell transplant. After this second round, she was allowed home but soon after another infection hit and she was in our local hospital, King's, for several weeks – including over Christmas and New Year, with a quick trip to Oxford just before Christmas to have an ovary removed and cryo-preserved in a bid to preserve her fertility. The infections finally calmed down enough for her to spend 10 days at home before the stem cell transplant conditioning process began.

Her sister, Dad and I were tested to see if we were a match but none of us were unfortunately. But thankfully, through the Anthony Nolan charity, a full match was found. The conditioning process involved yet more very intensive chemo plus radiotherapy. Then the stem cells were transferred and she had to be in isolation in her hospital room while they waited to see if the new cells would start producing white blood cells. The conditioning was pretty brutal and left her feeling ghastly for a week or two, but then she started to feel better and made an amazing recovery. She came home at the end of February, shortly before the country went into COVID lockdown.

As she was going to have to be in isolation for six months anyway, we weren't too bothered by lockdown. We spent a few lovely weeks together as a family at home, playing boardgames, watching movies and just enjoying each other’s company. Then on a regular weekly trip to the Marsden, we got the devastating news that her cancer was back. It had morphed into leukaemia and, because it had come back so quickly after transplant, there was no hope of a cure. They gave her some low dose chemo to try to buy her some more time, but the cancer was incredibly aggressive and she died just three weeks later, in May 2020.

With the fantastic support of our local hospice (St Christopher’s), Ruby died peacefully at home - without pain, in her own bed, with her Dad and I beside her and one of her beloved cats at the bottom of her bed.

Ruby was kind and smart and – her friends tell us - was the life and soul of the party. Above all, she had a fantastic sense of humour which kept us all going through even the darkest times. And she was so brave. She wasn't scared of dying, but she was scared of how dying would affect others; she was so relieved that A-level exams were cancelled this year as she didn’t want to impact her friends’ chances during exams!

Ruby believed that 'being kind' was the most important thing in the world; to people, animals, and the planet. Having been quiet as a young child, she had grown so much in confidence as a teenager. She really found her voice - as an activist on climate marches and political protests, and as head girl at her school. Knowing she didn’t have long to live, she asked to be remembered by the motto ‘Live Kindly, Live Loudly’. The 'Loudly' bit is about calling out injustice or unkindness. She had so many plans and really wanted to make a difference. She received so many lovely gifts while she was unwell but she started asking people to donate to cancer charities rather than buy her more things.

After she died, Ruby's consultant told us that they just haven't yet figured out how to successfully treat this kind of cancer, but how she fervently hoped that they would very soon. The only way they will do that is with funding. We all want to be able to improve the chances of others who are unlucky enough to be diagnosed with this in future.

Children's Cancer and Leukaemia Group is a leading children's cancer charity and the UK and Ireland's professional association for those involved in the treatment and care of children with cancer.Each week in the UK and Ireland, more than 30 children are diagnosed with cancer. We bring together professionals to ensure all children receive the best possible treatment and care. We support young patients and their families with our award winning, expert information. We fund and support research into childhood cancers.

Live Kindly, Live Loudly

Live Kindly, Live Loudly

Story

Belinda Morley-Fletcher

Alice Carey

Kerry Fisher

Anonymous

Anna Wright

Donation summary