Elliott Peto

Elliott was aged 4 when he was diagnosed with stage 4 Very High-Risk Metastatic Embryonal Rhabdomyosarcoma in October 2021. The prominent tumour was in his right jaw with intra-cranial extension, and had spread to his lungs, ribs, hips, and left femur.

He responded well to frontline treatment, and was started on maintenance chemotherapy in June 2022, but relapsed in August 2022. After 6 weeks of second line treatment were unsuccessful, and with the pace at which the recurring tumour was growing, there were no effective treatment options left. Elliott began palliative care in November, and went to heaven on 1st December 2022.

Elliott's Story...

In the middle of August 2021, a few weeks before Elliott was to start school, he began to wake in the night with pain in his cheek. This was out of character, as he had always been a good sleeper. We took him to our GP hoping she could find a reason for this uncharacteristic night pain. We were told it was residual pain from a cold, and told to give him paracetamol, and ibuprofen, as needed. The pain continued and we took him back to the surgery where Elliott was seen by another GP who gave the same diagnosis and advice.

At the start of September, Elliott started school. We noticed his behaviour was out of character, and was less enthusiastic than we had expected, as he usually loved being with his peers. This was exacerbated by his sleepless nights. It didn’t feel right, and we took him to the dentist to see if his oral health was behind the pain, but nothing was observed.

The pain continued and we took him back to the GP on 20th September. A paediatric referral was made for him and we were told we would know the date in about a week, where we could then decide if we wanted to choose private consultation instead. The expectation we were given for this referred appointment was that he wouldn’t receive an ultrasound, as it was unlikely to pick up anything regarding soft tissue, and that he might require a CT scan and have to have a general anaesthetic. We were told that, after examining Elliott that day, there were no worrying signs of anything serious, and to continue to give him ibuprofen at night. Continuing to feel frustrated by Elliott’s discomfort we called the surgery one more time at the end of September to check if a date had been made for his referral, and were advised to wait for the paediatric referral, and to continue with paracetamol and ibuprofen.

On 30th of September, before we got the date for his paediatric appointment, which was eventually scheduled for November, his teacher called us from school, concerned with his behaviour and mood. We kept him off school the following day and called the surgery again. The GP we spoke to this time said that if we were concerned, we should take him to A&E. When he was examined at A&E, it was noticed that he had developed a swelling on the right side of his face that made his features non symmetrical, and he was admitted onto Lions ward at Royal Berkshire Hospital. He was put onto broad-spectrum antibiotics as a precaution. He was examined the next day by the ENT specialist, who was unable to find a cause for the swelling, and arranged for Elliott to be transferred to the Childrens Hospital at the John Radcliffe Hospital in Oxford. Once there he had a facial ultrasound, which showed a presence of concern, and prompted for Elliott to have an MRI scan under general anaesthetic. The results of this scan on Thursday 7th October, well over a month after we had first taken Elliott to the GP complaining of pain, were devastating. The scan showed a malignant mass in his right jaw with intra-cranial extension.

At that point, we both left work to be with him. He then had a biopsy under general anaesthetic to assess the tumour they had found. We were sent home with the expectation of a return to Oxford to discuss the findings of the biopsy. When we arrived for this appointment, we were told that Elliott had a malignant fast growing unresectable tumour which they would soon identify to enable treatment to begin. We crumbled in front of the medical professionals present. After we composed ourselves, we were taken to John Radcliffe’s paediatric oncology ward, Kamran’s ward, where we were introduced to the team of Drs, nurses, and consultants, who would be taking care of Elliott. They told us the biopsy showed that Elliott had Embryonal Rhabdomyosarcoma. Once we had the biopsy results, the pace of treatment and care moved into a different gear. Even though we were still in disbelief about our situation and overwhelmed by what was happening, for the first time in months we felt that Elliott was getting the care he needed.

We were shocked when we heard that day that Elliott needed to go under GA again to have a full body MRI scan, CT scan and bone marrow asparation for staging the cancer. He also needed to have a Hickman Line putting into his chest to make routine blood tests and medicines easier and less painful. More upsetting was that our bright boy of just 4 years knew exactly what was required of him, saying, ‘I don’t want them to put that in my chest’. After his line was fitted, Elliott began his first round of very high-risk intensive IVADo chemotherapy on Wednesday 20th October. It transpired from his scans and biopsies that he had Very high Risk Metastatic Embryonal Rhabdomyosarcoma.

The vomiting and loss of appetite the chemotherapy caused was hard to witness. It was so bad that Elliott was unable to keep down the nasal gastric tubes he needed to supplement his calorie and fluid intake to maintain a healthy weight. On this basis, it was arranged for him to have a gastro peg fitted into his stomach. This had complications including swelling that at one point enveloped the gastro peg. After returning to Kamrans to receive specialist care to resolve this, we began to see the benefits with him gaining weight again.

The weight loss, hair loss, and severe constipation that followed, made the lead up to Christmas challenging. The chemotherapy lowered Elliott’s immunity, making him neutropenic. We often had to shield so he didn’t catch covid and miss his next cycle of chemotherapy. When he frequently had a temperature, we had to visit the isolation rooms on Lion’s Ward at Royal Berks Hospital, where he would receive the antibiotics, blood transfusions, and platelet transfusions required to stabilise him. We were almost on the ward for Christmas Day. In addition to these complications, the swelling caused by the tumour had caused Elliott’s right eyelid to stay open slightly and dry out as he slept. This in turn caused him to develop a corneal stromal scar. Elliott would now require frequent eye ointment each day.

On Christmas Eve 2021 we were told that the chemotherapy had begun to shrink his tumour and metastases. With brilliant support from Kamran’s ward and the community teams, we got better at managing the side effects of his treatment, and were delighted to hear in March 2022 that his cancer had reduced significantly. The slivers remaining, however were unresectable, and were a reminder that he had yet to beat this cancer. The next option was to complete a 5 1/2 week course of radiotherapy at UCLH. We were also put onto the FaR-RMS trial, and randomised for the standard dose of radiation. It was decided by the proton panel that Elliott should receive photon, instead of proton beam treatment, as his cancer had metastasised at diagnosis. He began the radiotherapy in late May 2022. This was hard as we were away from home for 5 1/2 weeks. Because of his age he had to have GA for each daily dose of radiotherapy which meant being nil by mouth until 11am most days. After 3 weeks he began to get sores and feel lethargic from the treatment too. The radiotherapy also affected his ability to make tears in the right eye, so we had to escalate his eye ointment. Once the radiotherapy finished we began maintenance chemotherapy, to finish off the residual metastatic sites. When we returned home, Elliott, who had excellent virtual support from his teacher and educational support on the wards, was finally able to return to school. It was so good to see him back with his mates, doing what he should have been doing. One of the consequences of attending school was that he caught covid, and spent 3 weeks in isolation and prevented him being able to take some of his maintenance chemotherapy.

Elliott’s follow up scan after the radiotherapy on 19th August 2022 showed a thickening at the right side of the base of the skull. He had a follow up scan 4 weeks after this, which confirmed the swelling was a recurrance of his tumour, and not inflammation from the radiotherapy. We were devastated to hear this news, but were keen to pursue the second line VIT treatment available. This meant more hospital, more hair loss, and more reduced immunity. He was also prescribed new medicine for nerve pain and a preventative for epilepsy. After six weeks it became clear that this treatment was not working. With the rate at which the cancer had reoccurred, we were suddenly in a situation where we didn’t have time to effectively pursue alternative treatment. We now focussed our efforts on creating memories and life experiences, with palliative support from Kamran’s ward and Helen House and Alexander Devine hospices.

The symptom management support he received allowed him to fulfil his wish list. He was actively doing the things he loved until 30th November when he had a bad day with lots of sleep. After an unsettled night and seizure in the early hours of 1st December Elliott went to heaven at 11:15am later that morning at Helen House.

What was your journey with cancer like?

The initial part of our journey before diagnosis was full of uncertainty and frustration. Like most parents, we knew our child, and were aware that he was unwell and acting out of character. But in spite of going through the appropriate channels promptly and repeatedly, we weren’t rewarded with the fast track transfer to specialist care we should have had, in order to catch this tumour at the earliest opportunity.

Once Elliott’s diagnosis had been made and his treatment had started, we were given solid support throughout his journey from a multitude of specialists both on the oncology wards and from the community teams at home.

We decided to be at home with Elliott throughout his treatment. This was partly because we were often shielding to prevent any delays, but also because we wanted to be there for our amazing boy. Being at home allowed us to both help with his medications, feeds, and physiotherapy. While absent from school we could supplement the virtual support for his education and entertainment too.

Elliott was inspiring throughout, and because of all the support around to help normalise his circumstance, he was able to get through all the horrific challenges required of him, and keep focussed on the things he thought mattered. This became even more poignant when his condition became terminal. He was a joyful, funny, very caring and inquisitive little boy who loved life and continued to do so through this illness. He kept working through his wish list, and motivated us to live for the day. I’m certain that drive would have seen him through if more advanced innovations and treatments were available.

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

I feel strongly that changes need to be made in frontline care for this disease. It was over a month from when we first took him to the GP until he got his diagnosis. I’m confident an earlier referral to the oncology consultants, would have given Elliott better treatment options and a better chance of a cure. Better training, and better education about this disease needs to be provided at the GP level. More skills in recognising the condition and it’s symptoms, and quicker access to precautionary scanning need to be available. Being told retrospectively, this disease was very rare, offers no comfort.

While I was pleased there was initial success with Elliott’s treatment, the trauma he endured to achieve this was hard to witness. More research needs to be done to find kinder treatments, and more effective treatment options for recurrence of the disease. I would like there to be better understanding of Rhabdomyosarcoma on a genetic level, and more research done to make immunotherapy a real treatment option.

There are a lot of good people working at Kamran’s Ward, and other paediatric oncology wards all around the country. They need support and better solutions to help them get children like Elliott cured.

News

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

We will be opening as a 501(c)(3) in 2023.
Press coverage received in Sunday’s Observer on 15th January 2023.
The sale of gold bath bombs throughout UK Lush stores raises £150K.
Pilot findings published in an article in the Journal of Clinical Oncology.
Our ‘Say My Name’ Season’s Greeting’s card are now available to buy.
Epic cycling challenge for Amber’s Arc raises over £11K.
Telling the stories of the inspirations behind our work is the focus for CCAM 2022
Alice’s Arc referenced in Washington Post news article discussing research in children’s cancers
Lush will be selling a ‘gold’ dragon’s egg bath bomb in support of Dexter’s Arc
An insight into life in the laboratory for Dr Joanna Selfe at the ICR.
The Alice’s Arc annual report covering 1st October 2020 to 30th September 2021.
Alice’s Arc is delighted to be collaborating with CCLG to deliver this research to improve the treatment decision-making process for families.
Delighted to discuss progress on research regarding genetic markers of rhabdomyosarcoma and improving treatment therapies.
They took part in the London West 10kms Tough Mudder in support of Gaspard’s experience with rhabdomyosarcoma.
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 £2,000,000 and now aim to reach £5,000,000 to pay for research to find a cure and better treatments for rhabdomyosarcoma.
Raised £2,000,000
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