Justin Spoon

A small bump appeared next to Justin’s left nostril in the fall of 2020, his senior year of college. Within a few weeks he was diagnosed with stage one, group three, embryonal rhabdomyosarcoma. At the time of diagnosis, the cancer was confined to the area between his nose and the roof of his mouth. Unfortunately, his cancer did not respond to chemotherapy, and he ultimately endured 22 rounds of chemotherapy, 33 rounds of proton radiation, two radical resections of his upper jaw and palate, before attempting five additional targeted medications (monoclonal antibodies and inhibitors). In the fall of 2022, after two full years of treatment, and approximately 275 nights in the hospital total, Justin enrolled in a CAR-T trial, which was unsuccessful. In the spring of 2023, he was told there were no options. So, he enrolled in hospice and ultimately died from rhabdomyosarcoma at the age of 24 on March 23, 2023.  



Justin's Story...

As a senior in college at Asbury University, Justin noticed a small bump next to his left nostril. He was busy applying for graduate school and attempting his third bid for nationals as a collegiate distance runner. He visited a campus doctor, who initially treated for a possible infection with antibiotics. A few weeks later he was diagnosed with embryonal rhabdomyosarcoma located in the nasopharyngeal area. He was 21 at the time. While he was initially diagnosed at the Lexington Clinic in Kentucky where he was attending college, he was ultimately treated at Cincinnati Children’s Hospital. He underwent extensive staging at Cincinnati Children’s, including bone marrow biopsy, sentinel lymph node biopsy, and removal of suspicious spots in his lungs for examination.  

Justin continued to complete his final college courses while he began a rigorous course of chemotherapy (vincristine, dactinomycin and cyclophosphamide, also known as VAC). After four rounds, it was determined that his tumor had grown under treatment. It was like a gut-punch to find out that the treatment had been ineffective. His team switched to a more aggressive chemo regimen of doxorubicin, etoposide and ifosfamide. After one round, the tumor was surgically removed in a procedure known as a maxillectomy, which resulted in seven days in ICU at University of Cincinnati Medical Center.  In the spring of 2021 and just three weeks after this dramatic surgery, Justin graduated from college to a standing ovation of his peers. Following the surgery, Justin was prescribed additional rounds of this protocol along with 33 proton radiation treatments to the area. Ten months after his initial diagnosis, his doctors declared him NED (No Evidence of Disease). Unfortunately, two weeks after the end of treatment he developed a high-grade fever which resulted in a 21-day hospital stay. He was ultimately diagnosed with a fungal infection that had invaded nearly every organ and muscle in his body, including his lungs.  

At the time of the resection, the medical team pursued genomic sequencing, which revealed a TFCP2 mutation. This mutation has been found to be highly resistant to treatment in other patients, so his medical team pursued an aggressive maintenance therapy of six months of irinotecan and temozolomide, along with the drug Lorlatinib to specifically target his tumor. He began this treatment in the fall of 2021. He felt well enough to begin coaching a local high school cross-country team and he returned to work at a local autism clinic as a small group instructor, which gave him an enormous sense of purpose. Optimistic about his future, Justin applied and was accepted to Xavier University in their License in Mental Health Counseling program.  

Ten months after he was declared NED, Justin relapsed for the first time at the site of the original tumor. His medical team immediately went back to work on this stubborn local relapse, and Justin endured a second maxillectomy, this time leaving him with only one tooth on his upper jaw. The team was able to secure clear margins, which provided him with a great deal of hope. This second tumor underwent extensive testing, and his team tried three unique combinations of drugs, with no impact.  

So, in January of 2023, Justin agreed to attempt a Phase One CART trial at Seattle Children’s Hospital. A lifelong fan of the Seattle Seahawks, he soaked up as much joy as he could by attending two home games and meeting several of the players. Unfortunately, the trial was not successful for Justin, and he was given weeks to live. He returned home in the spring of 2023 to Hospice. He spent every moment he had left by spending time with the people he loved. Justin died from rhabdomyosarcoma on March 23, 2023, two years and four months after his diagnosis at the age of 24. 

What was your journey with cancer like?

Justin approached his cancer diagnosis and treatments with persistence, faith, and fortitude. He was determined to live his life to the fullest throughout the entire ordeal. Not a fan of being called a hero or a warrior, Justin attempted to just “do the treatments” and keep living his life.

In the fall of 2021, when he learned he was in “remission”, he openly shared with his friends and family on social media that he was “incredibly grateful for every single prayer, conversation, text, gift, donation and call that helped him”. He knew the journey wasn’t over yet, but he also assured his friends that the one thing cancer could not take from him was his smile, despite having most of his teeth removed along with his tumor. Even with an incredibly optimistic mindsight, he admitted that the whole situation was quite difficult. In the fall of 2022, when he relapsed for the second time, he wrote this in his personal journal: 

It’s back. Again.  

I know I hardly share about what cancer treatment has been like, but since I was told I was in remission a year ago, it’s come back twice. I’ve tried my hardest throughout my fight with cancer to stay positive, to pour into others the way I’ve been poured into, but some days I realize I’ve got nothing left to pour out. As an optimist, I’m trying my best to see the good in this, but there is no good in cancer. It takes and takes and takes until I’ve got absolutely nothing left to give.” 

After a frank conversation with his oncologist, in which he learned that he would unlikely survive rhabdomyosarcoma, Justin once again wrote his heartfelt thoughts in a journal, but this time with a sense of determination to live his life with an intense sense of purpose: 

There is no cure…nobody is giving up, but it was also made clear to me that unless someone discovers an outright cure for rhabdo, I’ll die in a few years. I refuse to let that news break me though. Life is only worth living if you make it worth it. Right now, I vow to live every single day I have left to the fullest. I vow to love with my whole heart, laugh with every ounce of air in my lungs, run ‘til my legs give out, and squeeze every drop of goodness out of this load of lemons life has dropped on me…” 

True to these words, Justin lived every single day to the fullest. He committed to donating his tumors to medical science, spent his days with those he loved most, kept on laughing every day, and even planned a picnic for his family less than two days before he died.   

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

For most of Justin’s treatment, he maintained a strong focus on his initial career calling: advocating and teaching those on the autism spectrum. He didn’t initially feel called to advocate for better treatments for childhood cancer. However, having some experience with social science research, he inquired about research efforts for rhabdomyosarcoma, and became determined that his own tumors would be used to further the field. So, he donated tissue samples and participated in ground-breaking trials for the disease. After learning that he only had weeks to live, he became angry and cried. He shared his deepest frustration with the lack of fairness regarding the lack of overall focus to find more effective, less toxic treatments for childhood cancer in general, and specifically rhabdomyosarcoma. His biggest concern was not for himself, but for the younger children and their families who face this terrible disease. As a result, he asked to have Spoon’s Arc created to raise funds and invest in research that could help lead the way in providing hope for future families and children impacted by the disease.  



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

A team of 105 runners comprising scientists, doctors, surgeons, nurses, pharmacists, families, friends, parents all ran together.
This incredible community event marked Mollie’s five year anniversary of her diagnosis with rhabdomyosarcoma.
An insight into life in the laboratory for Post Doc, Dr Christina Burke.
We are delighted to publish our Annual Report covering FY21/22.
Around the Wash Spiderman themed cycle in memory of Elliott Peto.
This high profile news coverage was showcased on 10th May 2023.
An article focussed on the Cancer Grand Challenge, NexTGen, featuring co-founder, Sara Wakeling.
On the 11th March 2023 families, medical professionals and scientists came together as a community.
The launch took place at a special memorial assembly at Elliott’s school.
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 £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