Ruby was one of the funniest, happiest, most amazing little girls you could ever have the pleasure of knowing. In her short life she achieved a great deal and had lots of fun doing it.
Ruby lost her life to alveolar rhabdomyosarcoma in the early hours of 3 January 2020, two weeks before her 7th birthday. She is missed every day.
We’re committed to keeping her memory alive by raising funds for research into the cruel disease that stole our little girl’s future.
Ruby was born on 19 January 2013. She was the happiest of happy children; noisy, funny, energetic and kind. Being an only child, she loved being around other people, children and adults alike. She made people smile wherever she went.
At the age of 4, we noticed a slight swelling in Ruby’s left lower calf. She had no symptoms of anything, but we needed to know what the swelling was.
Following a consultation with our GP, Ruby was referred to Ninewells Hospital, Dundee. Following a review in paediatrics, an MRI was ordered. The scan revealed a tumour and we were told that it was highly likely to be cancer. Ruby was referred to the nearest specialist centre, Edinburgh Sick Children’s hospital, for further tests.
By the time a diagnosis was made and treatment started, Ruby couldn’t stand or walk because a tumour in her spine was wrapping around her spinal cord. She was waking up during the night with a sore back. She had disease in her leg, spine, pelvic area and lungs.
Ruby received 9 cycles of chemotherapy and 6 weeks of radiotherapy in Edinburgh. A couple of months into treatment she could walk again; the chemo was working. There were regular admissions to Ninewells during this time due to febrile neutropenia.
The most difficult period was during radiotherapy; it really affected her, especially her oesophagus. For the first time during her treatment, a nasogastric tube was inserted. She hated it. Her weight plummeted, she didn‘t eat, refused to have feed down the tube and only drank iced water. She spent a week in isolation in Ninewells with shingles.
Once the radiotherapy was complete there was a short break before starting maintenance chemotherapy which she tolerated really well. At this point she was like a normal, healthy child, doing everything a young child does and loving life. The maintenance finished in November 2018 and her scans were clear in December.
In February 2019, Ruby complained of a sore back. Scans revealed relapse and she started chemotherapy again. A PEG tube was placed into her stomach for the oral medication to be given, to make her quality of life better.
Sadly, after about 5 cycles, scans revealed progression in her spine. Our consultant started looking for the next option, as did we. There was no clear pathway. She started a new protocol in October but it didn’t work and she didn’t tolerate it well.
The tumour in Ruby’s spine quickly took over. She was paralysed from the waist down. She was incontinent. She was in severe pain. The rhabdo was spreading.
The next few months were extremely difficult, with only a short reprieve following emergency radiotherapy which gave her significant pain relief. We were losing her and we knew it. She now had tumours behind both of her eyes.
In December 2019, Ruby developed pneumonia and had to be transferred by the ScotSTAR paediatric intensive care transport to the paediatric intensive care unit in Edinburgh following a left lung collapse.
They saved Ruby’s life and she managed to make the most of Christmas while in Edinburgh Sick Children’s hospital. She was then transferred back to Ninewells where she remained until she left us, peacefully, in the early hours of 3 January 2020, the day after her Daddy’s birthday.
We want to help other families. We need a cure. It’s as simple as that. Or a treatment that successfully manages the disease.
The current treatment, chemotherapy and radiotherapy, has been around for decades. It isn’t a cure. It treats the symptoms — the tumours. It doesn’t cure the type of rhabdomyosarcoma that Ruby had. The treatment just isn’t good enough. There need to be better options.
More research is needed to achieve this. There will be an answer, we just need to find it.
Clinicians globally need to share their experience and outcomes in a better way, to improve understanding and awareness of options for second and third line treatment. Medicines that could provide benefit to children need to be more readily available, especially when the options are so limited.
Due to patient numbers there will not always be a lot of evidence, but when you run out of options anything that might work is worth trying, as long as it’s safe.
Be More Ruby was created after Ruby passed away. Initially it was a phrase used to inspire others at the celebration of her life. It’s a goal for all of us, to be more like Ruby.
Now, Be More Ruby exists to raise awareness and funds for research into rhabdomyosarcoma. We set up a named fund with CCLG in 2019 called Super Ruby’s Rhabdo Raiser. All money raised by Be More Ruby goes into this fund.