Frank Cheek

Frank, now aged 6, was diagnosed in July 2016 and is currently three years clear of cancer. He was diagnosed with embryonal rhabdomyosarcoma in the nasal pharynx with optic involvement. His care was led from the Royal Marsden, Sutton.

Frank's Story...

In June 2016, Frankie, aged 2, started to wake at night screaming and saying that his nose hurt. We took him to the local GP and they said nothing appeared to be wrong with him. This continued for a few weeks and, one evening, when he was particularly upset, we took him to our local hospital, Pembury in Tunbridge Wells. They looked up his nose with an eye phone light and said there was nothing to see. He was now beginning to get streaks of fresh blood and mucus from his right nostril. We returned to our GP and they said he probably had a nasal infection and provided us with various nasal sprays. After the 6th trip to the GP when Frankie had blood coming from his right eye, we were sent to Pembury again. After a 5 hour wait they looked up his nose again and said that they could see something shiny and that they didn’t want to pull it out in case it was attached something. The Consultant, we needed to see was away for a week and so we were sent home again. During that week Frankie was so ill and in so much pain that we had to go to A&E twice. However, we were sent home as the Consultant was still away. By this point there was now a visible growth coming out of the bottom of his nostril, which was very bloody. When we finally saw the Consultant, he concluded that Frankie had picked his nose and the body had over repaired itself and created granulation tissue. He said it was nothing to worry about but that they would needed to remove it Under GA. They decided this approach would be better than an MRI given that the MRI scanner was so busy and it would be a longer wait for the scan. The Consultant managed to remove part of it but told us that it was bigger than expected and was positioned deeply in the nasal passage and too risky to remove. By this point Frankie was very poorly and we were sent home. He began to bleed from his eye and nose and I demanded to have an MRI scan. Finally, the scan revealed a large mass engulfing the nasal pharynx, moving the brain out of its way, destroying a bone in the back of his nose and lurking behind his eyes.

The diagnosis was embryonal rhabdomyosarcoma, a word we had never heard before. Frankie was transferred to St Georges Hospital, Tooting where he had a bone marrow aspirate, surgery to fit a Hickman line and another MRI scan. Emergency chemo began but we noticed that his right eye had become fixed. The Moorfields eye division at St Georges confirmed that his optic nerve had been damaged by the tumour and that he had probably lost the vision in his right eye.

Frankie underwent three rounds of intensive chemotherapy at the Royal Marsden in Sutton. Given that the tumour was inoperable, he was approved to have proton radiation in Oklahoma City, USA. Proton beam therapy is only suitable for a small number of people. It is used to help reduce the risk of long-term side effects that can often develop after standard radiotherapy. It can also be used to treat cancers that are close to critical structures in the body to minimise damage to healthy areas. He had 32 doses of proton with a GA each time. Alongside proton therapy, Frankie had three further rounds of intensive chemotherapy. During this time a neuro-opthalmologist confirmed that he was blind in the right eye. We spent 3 months in the US before returning to the UK for two further rounds of chemotherapy.

Frankie was scanned at the end of his treatment in February 2017 and the fantastic news was received that there was no evidence of disease! All clear! His Hickman line was removed and life returned to somewhat normality. He was been scanned 3 monthly for the last 3 years and his most recent scan in February 2020 he still remains clear. We are extremely lucky and forever grateful for the Royal Marsden and the Oklahoma proton centre for all they have done for Frankie. He is now 6 years old in Year 2 at primary school and loving life. He will have one more scan in July 2020. He requires a growth hormone injection everyday to stimulate his growth and he has also undergone surgery for cataracts in his eyes which have resulted from his treatments. Frankie and his family have been actively fundraising for Alice’s Arc since they were introduced in 2016.

What was your journey with cancer like?

From a terrible misdiagnosis which resulted Frankie loosing the sight in his right eye which was a hard pill to swallow. The constant fear of infection the relentless taking of his temperature as if a spike that would lead to 3 days hospital for IV antibiotics in a hospital that didn’t have an oncology ward it was a general hospital not an ideal place for a neutropenic child. Frankie underwent 7 blood transfusions and 3 platelet transfusions. We found our time in America a positive one and were looked after very well by the hospitals there. The journey was hard and terrifying at times, people often said I don’t know how you’re doing this, the answer was we have no choice in the matter we had to fight and stay as strong as we could for Frankie and his big sister Layla.

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

We would like to see kinder treatments, less mis-diagnosis. GP’s & hospitals should be educated more about rare children’s cancers to know the signs to look for. More awareness to be raised within communities, more adverts on TV or in newspapers for fund raising and awareness to be increased in the UK.

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