Ruby Stewart

Ruby, aged 4, was diagnosed with stage 4 alveolar rhabdomyosarcoma in September 2017. At diagnosis, Ruby had a primary tumour in her left lower calf and metastases in her thoracic spine, pelvic area and lungs. Following successful 1st line treatment and maintenance chemotherapy, Ruby relapsed in February 2019 and sadly passed away on 3rd January 2020, 2 weeks before her 7th birthday.

Ruby's Story...

In July 2017, we noticed that there was a slight swelling at the bottom of Ruby’s left calf, just above her ankle. It was very subtle, but there was a definite difference compared with her right. She had no symptoms of anything. She was a perfectly happy, apparently healthy, very active 4 year old, about to start primary school.

Our friend and next door neighbour is a GP so we asked if she would have a look at Ruby’s leg, which she did, the same day as we noticed the swelling. She said it was probably nothing to worry about but to make an appointment with our GP for when we returned from holiday. We then went away for 2 weeks and saw the GP on our return. Following that appointment a referral was made to our local hospital, Ninewells, in Dundee.

We were fortunate that one of us works in Ninewells with good contacts in paediatrics and orthopaedics. We managed to find out that an orthopaedic referral had been made but this had then been changed to paediatric haematology. We chased the referral directly with senior clinicians in Ninewells and Ruby was eventually seen within a few weeks of the referral being made.

Following the first review in Ninewells, an MRI was ordered and we found out that it was highly likely to be cancer. We were then 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 the tumour in her spine was wrapping around her spinal cord. She was waking up during the night with a sore back.

Ruby received 9 cycles of IVADo chemotherapy and 6 weeks of radiotherapy in Edinburgh. A couple of months into treatment she could walk again; the chemo was working. We had 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 soon after that she commenced 2nd line treatment – VIT chemotherapy. A PEG tube was placed into her stomach for the oral medication to be given, to make her quality of life better. Unfortunately, after about 5 cycles, scans revealed progression in her spine so our consultant started looking for the next option, as did we. There was no clear pathway. She started a new protocol in October 2019 but it didn’t work and she didn’t tolerate it well. The tumour in her lumbar 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 a short reprieve following emergency radiotherapy which gave her significant pain relief, but we were losing her and we knew it. She now had tumours behind both of her eyes. She developed pneumonia and had to be transferred by ScotSTAR to PICU in Edinburgh following a left lung collapse. They saved her 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 3rd January, the day after her Daddy’s birthday.

Ruby’s family have set up a foundation called Be More Ruby and have raised more than £60K to date. These funds will go towards research in to rhabdomyosarcoma.

What was your journey with cancer like?

At times it was difficult but for most of it Ruby was happy, active, resilient and led a pretty normal life. She didn’t enjoy getting chemo but she never really complained and always made the most of the situation, having plenty of fun while she was in hospital, when she was well enough. At the start she saw it all as a big adventure, excited about having a sleep over in the hospital. The last few months of her life were horrible but even then, we managed to have some fun times and made some brilliant memories.

What changes would you like to see for children diagnosed in the future?

We need a cure. If we can’t find a cure we need a treatment that successfully manages the disease. The current treatment, chemotherapy that’s been around for decades, isn’t a cure. It treats the symptoms – the tumours. It doesn’t cure the disease, not the type of rhabdomyosarcoma that Ruby had. The treatment just isn’t good enough. There need to be more, better options and more, better research is needed to achieve this. There also needs to be better sharing of outcomes by clinicians globally to improve understanding and awareness of options for 2nd & 3rd line treatment. Lastly, medicines that could provide benefit need to be more available to children especially when there are limited treatment options. 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.


Read all the latest fundraising news, charity news and commentary on childhood cancer.

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The family fun morning hosted by the school Alice attends raised in excess of £2K for the charity.
Finn, passed away from rhabdo, aged 10 after a courageous 18 month fight with the disease.
Two school girls create fresh lemonade recipe and set up a stall selling it at an event celebrating Armed Forces Day
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Alice’s Arc has commented on a letter to President Juncker regarding delays to the reform of EU Paediatric Regulation.
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Paul raised over £2K shaving his 9 inch hair and beard off and donating it to the little princess charity
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Our Mission

We have already raised £3,500,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £3,500,000
Target:£105,545 Higher Scientific Officer & Lab Reagents

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