Tommy Jones

In September 2021, Tommy, aged 5, was diagnosed with embryonal rhabdomyosarcoma of the parapharyngeal region in the head, with tumours also detected on his lungs. Tommy has received IVADO chemotherapy and proton beam therapy in Essen, Germany. Tommy is currently on maintenance chemotherapy at Leicester Paediatric Oncology Department at Leicester Royal Infirmary Hospital.

Tommy's Story...

At the beginning of the summer holidays in 2021, we were on a camping  trip in Cornwall and Tommy started snoring at night which was unusual. He continued without any other symptoms for the rest of our stay. The evening we returned home he spiked a high temperature above 40 degrees and was delirious. Unhappy to start the night without him being seen, we took Tommy to the local walk in urgent care centre. Here, they took one look in his mouth and immediately concluded that he had tonsillitis and prescribed 10 days of antibiotics.

 At the end of the 10 days, with us due to fly out to Spain for our family holiday in 3 days time, we took him to see our GP. He was content that the antibiotics had taken effect and the swelling in his mouth had gone down with only a slight redness and inflammation on the left hand side. Tommy was prescribed a further 5 days of a higher dose of antibiotics so he was fully covered especially with our imminent trip aboard.

Once in Spain, Tommy, having not complained once from the start of his symptoms, on the final day of the prescribed antibiotics said his throat felt lumpy and we took him to see the GP on site. She prescribed more antibiotics, steroids and antihistamine as the swelling had increased and a lump on the left hand side of his throat was clearly visible. That night we became increasingly concerned by his laboured breathing. He was pausing for breath and we called the emergency line. By 5am we were at the closest hospital just outside of Cartagena. Here, we slowly made our way through the emergency system, which was not helped by the language barrier. Blood samples were taken with no warning and force, and with limited communication this was understandably very frightening for Tommy. We finally made it to the ENT department where many doctors examined him and he had a CT scan, as he refused the camera examination via his nose. We were repeatedly told they didn’t know what it was and they wanted to take a biopsy of the lump in his throat. After an excruciating experience of Tommy being taken away from us in order to be put to sleep without us by his side, he had a general anaesthetic and a biopsy was taken.

 Once the procedure was completed and we were told they didn’t like the sight of what they found, we made plans to get him back to the UK as soon as possible.

What was your journey with cancer like?

As with any family who has gone through this, our world has been turned upside down since Tommy’s diagnosis. However, having made it through the gruelling months of intensive treatment, Tommy has gone from strength to strength. He has overwhelmed us with his determination and stoic attitude to getting through his treatment. Despite Tommy still being on maintenance chemotherapy, which is far less demanding, we feel so lucky to get back to a life that is as normal as it can now be and we appreciate every day we have. The world is seen from a completely different prospective having been through such an experience.

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

We feel there should be far greater funding from the government dedicated to the research and development of advanced new treatments for children with rhabdomyosarcoma. Currently only 2-3% of cancer research funding in the UK goes towards ALL childhood cancers. We also believe there must be much more general awareness of this horrendous disease, that would in turn benefit the children and families exposed to this.

News

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

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