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.

News

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

Sara Wakeling is a patient advocate on the Cancer Grand Challenge, NexTGen.
Delighted to be invited as speakers representing the parental perspective of rhabdomyosarcoma.
Please consider participating in a research interview as part of the REFoRMS (Relapsed and Refractory Rhabdomyosarcoma) study, led by the University of York.
On Tuesday 26th April 2022 this debate was held for the first time with 22 MPs speaking on behalf of constituents.
New research project aims to lead to better outcomes for children with the MYOD1 L122R mutation in fusion negative RMS.
2022 LLHM team of 18 runners raise £16K for research into rhabdomyosarcoma.
On 7th March 2022, we visited Great Ormond Street Hospital, where Alice’s care and treatment for rhabdomyosarcoma was led.
Alice’s Arc had the opportunity to meet the research team undertaking the rhabdomyosarcoma projects invested in and to tour the laboratories
The roles are for a Scientific Project Manager and a Statistician.
This is the first in a series of meet the Alice’s Arc researchers across our research projects.
This new work package will explore the targets identified in RMS model systems with a focus on clinical translation.
We are delighted to appear in the ICR’s latest edition of their twice-yearly Search magazine.
Freddie’s family are inviting you to become part of this special community this Easter and support Alice’s Arc
Will Rutt, aged 20, sadly passed away on Sunday 21st February 2021 after a four year journey with stage 4 ARMS
This project will increase understanding of RAS gene pathways in RMS with a focus on DNA repair and replication stress.
Having being touched by Gaspard’s journey with cancer, a member of staff nominated Alice’s Arc to receive a donation
Assessing The Clinical Value For ct-DNA In Blood To Monitor The Response To Treatments and Identify Disease Recurrence
300 of these candles incorporating Elsa’s very own artwork and name have been sold over the festive season
We are delighted to be supporting five innovative research projects led by several leading cancer research centres
Their daughter, Sophie, was recently diagnosed with rhabdomyosarcoma and her family are fundraising for the charity.
FaR-RMS opened in September 2020 and is now open in ten sites in England and Scotland and several sites across Europe.
On Friday 6th November 2020 Plan.com organised a turn ‘pink’ fundraising day for Alice’s Arc.
Phil and Vicky Macqueen both ran this virtual event in memory of their niece, Jessica Macqueen.
We worked closely with families impacted by cancer to help local communities and businesses ‘go gold’ and fundraise.
The pandemic of Covid-19 has made it mandatory to wear face coverings in certain settings. Why not buy one of ours?
A unique wing walk, in memory of Alice Wakeling and Freddie Carpenter and to go gold for children with cancer
In memory of Elsa McGee, her Dad and other family walked 125 miles over 5 days along the Leeds to Liverpool canal path
Covid-19 inspired Tom to grow his hair and transform himself in to the Tiger King to raise funds for Hope With Gaspard
To mark Faye’s 5th birthday and as a way of giving back since Faye’s cancer diagnosis, her Aunt and Grandad ran 10kms
Please read this edition of our Annual Report to get a snapshot of our activity for the year and our future plans.
Alice’s school choose Alice’s Arc as their charity of the year for the 2019/20 academic school year
Elsa sadly died in April 2020 and her parents want the funds raised to contribute to research in to rhabdomyosarcoma.
Generous support for the charity enabled us to create goody bags for children with cancer receiving chemotherapy at GOSH
Natalie, a trainee psychologist, is the mother of two boys, both diagnosed with cancer within months of one another.
After a 4 year battle, Elsa sadly passed away from embryonal rhabdomyosarcoma on April 14th 2020.
Alice’s school organised a fun run, on Saturday 14th March 2020, in Knole Park for the whole school and their families.
We hosted 85 people at St Julian’s Club, Sevenoaks on Saturday 14th March 2020 at a ‘Go Gold’ casino fundraising event
Sara was delighted to take up the opportunity to attend this reception in celebration of International Woman’s Day
This tells Alice’s cancer story from her point of view and illustrates the mission and progress of Alice’s Arc
The club supported the charity in 2019 and ran several fundraising initiatives including a quiz.
There have been various fundraising initiatives put in place around the firm’s network in memory of Alice Wakeling.
Local schools Walthamstow Hall Junior and New Beacon held Valentine’s fundraising events
Up Up and Away and Alice’s Arc enjoyed visiting the oncology wards with heart balloons, sweet cones and chocolate hearts
Are you feeling lucky? Please join us for a gold casino fundraising evening raising money for Alice’s Arc.
The Edward Gostling Foundation supports people living with long-term illnesses
Jess Macqueen passed away from rhabdomyosarcoma just 5 months after her diagnosis
We are delighted to announce that, the newly formed fund, Hope With Gaspard, will raise funds for Alice’s Arc
Benjamin Ronsseray nominated the charity for this award following his son, Gaspard’s diagnosis with rhabdomyosarcoma.
The EpSSG meeting brings together international professionals devoted to treating children with soft tissue sarcoma
23 parents ran the Watford Autumn 10K in support of Alice’s Arc
Alice’s Arc has fulfilled it’s initial three year pledge to the ICR and given the team a further £69K for research
The school has already raised almost £10K. Latest fundraisers include the sale of the ‘Alice’ bow and a singing event .
8 cyclists rode over 240 miles from London to Paris over three days to raise funds for Alice’s Arc
On the 8th October 2019, Alice Wakeling passed away peacefully, after almost 5 years fighting rhabdomyosarcoma.
The charity had 14 runners participating in this stunning central London Half Marathon.
We have now donated almost £280K to the ICR team since the inception of the relationship in 2016.
This leaflet provides information on who we are, what we do, why we do it and how you can help.
Shane is taking on this challenge in August, cycling from Land’s End to John O’Groats, in memory of his nephew, Freddie.
Olivia Ruhen will work in a Postdoc role on the ICR’s rhabdomyosarcoma research team
Over 100 spectators braved snowy conditions to watch 45 people fire walk to raise funds to help children with cancer
We are delighted to be featured in an article in the ICR’s Spring 2019 edition of their Search magazine
Dunn AC Ltd is helping raise awareness and funds for the charity. They have added the logo to their fleet of vans
Alice’s recent scans show no evidence of cancer. The damage from the AMORE surgery and brachytherapy has healed.
In memory of Freddie Carpenter, Waitrose Rickmansworth, supported the charity with their community green coin scheme.
These funds have enabled the recruitment of a Clinical Research Fellow to add to the team researching rhabdo at the ICR.
The ICR has published a report called ‘From patent to patient – analysing access to innovative cancer drugs
We are delighted to share that the charity has raised over £250K since our inception 2.5 years ago.
It’s a huge tribute to a wonderful 5 year old. Donations to Alice’s Arc at Freddie’s funeral reached over £10K
Alice’s Arc is hosting a fire walk fundraiser in conjunction with the Mayor and local Sevenoaks Council
The ICR team continue to make progress researching rhabdomyosarcoma using the funds raised by Alice’s Arc
Finn’s mother arranged a fantastic event in Leigh-on-Sea, incorporating a quiz, a live auction and a raffle.
Team Cheek went on another colossal walk for the charity raising in excess of £3K
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
The charity has received support from various individuals choosing to run and cycle to raise money for the charity
Mike ran the London Marathon in 3 hours and 2 minutes raising almost £4K in support of a family impacted by rhabdo
First Give and Hampstead School joined forces to help children support their community and pitch for their chosen causes
Choose Alice’s Arc when shopping on Amazon Smile UK and 0.5% of the purchase price will be donated to us
Alice is being treated using a relapse chemotherapy regime and a specialist procedure in Amsterdam known as AMORE
This money covers the salary of a Higher Scientific Officer to support the ICR’s rhabdomyosarcoma research.
Alice’s Arc has commented on a letter to President Juncker regarding delays to the reform of EU Paediatric Regulation.
The charity is delighted to have received support from accountants, Kingston Smith and a major US private equity house.
Allen & Overy will make an annual donation to support the mission of Alice’s Arc
We have provided funds to enable an injection of the drug, neulasta for a 3 year old boy suffering from rhabdomyosarcoma
The charity has provided the ICR with funds to acquire laboratory reagents and equipment
Current EU legislation allows Pharmas to use a loophole in EU legislation to avoid trialling cancer drugs in children
Paul raised over £2K shaving his 9 inch hair and beard off and donating it to the little princess charity
Make Believe Sevenoaks invited parents of children in their drama class to join in for a day to raise money for charity
Simon and Sandy Haddock showcased their recent art works at an art evening which raised £1K for Alice’s Arc
Rani completed a 25km walk across 16 London bridges raising £1K for Alice’s Arc.
Accenture nominated Alice’s Arc as one of three charities to donate funds raised from its annual OPSCARS auction
Matt Cheek and Dave Watts walked 100km in 24hours for Matt’s 3 year old nephew who has rhabdomyosarcoma.
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Our Mission

We have already raised £1,600,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £1,600,000
Target:£105,545 Higher Scientific Officer & Lab Reagents

Year 1

Target:£179,558

Year 2

Target:£214,897

Year 3

Target:£333,333

Year 4

Target:£333,333

Year 5

Target:£333,334

Year 6