Ruby's Leukaemia & Lymphoma 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 board games, 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 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.

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. So, we set up a named fund with CCLG to raise funds for more research into effective treatments for T-cell blood cancers: [https://specialnamedfunds.cclg.org.uk/rubys-live-kindly-live-loudly-fund]