Amber Gooch-Boags

Amber, now aged 12, was diagnosed with inoperable parameningeal Embryonal Rhabdomyosarcoma when she was 7, in 2017. Amber’s treatment was led by Addenbrookes, UK and she received chemotherapy and proton therapy in Florida.
Amber’s cancer is currently stable and whilst she lives with the impact of her tumour and the side effects of her treatment, she is thriving.

Amber's Story...

In March 2017 Amber was at school enjoying a celebratory disco for completing the Year 2 reading challenge with her friends, when her teacher noticed something was happening to her face. She called another member of staff over and they both watched as the right side of Ambers face dropped and swelled before their eyes. The school rang us and we took Amber straight to the GP, the GP diagnosed Belle’s Palsy, he gave us some leaflets and said it would resolve on its own. I was terrified it was a brain tumour. We got home and realised that Amber’s right eye wouldn’t close and was getting very dry, the GP had closed by this time so we got some drops from Tesco. We went back to the GP the next day and told him that Amber had pain down the right side of her face and head and her eye was sore, he gave us some more eye lubricant and said that if we were worried over the weekend to take her to A&E. We took Amber to A&E on Sunday, the paediatric consultant did a neurological exam and said it wasn’t a tumour, he confirmed belle’s palsy and sent her home with 7 days of the steroid prednisone.

Over the next couple of days Amber’s pain was getting worse but we were told it was simply deferred pain from the facial nerve and her personality changes were side effects from the steroids.  We went back to the doctors again the next week and saw a different GP, he seemed far more concerned than the previous GP/Consultant. We asked him to keep an eye on her and he agreed she needed to be seen weekly to assess any improvement in her face and monitor her other symptoms.  Amber began to wake in the night sobbing with earaches and headaches. She had begun to retreat into her self, and suffered nightmares. She didn’t want to see friends and began to fall off the horse she rode at the weekend, every car journey caused a bad headache, our bright star was fading before our eyes. We went back to the GP, he made an urgent referral to the hospital and an appointment came through for mid May. On the 2nd May Amber woke up and couldn’t walk in a straight line, we immediately went to the GP who sent Amber straight to the hospital.

Amber finally had an MRI, which identified a mass in her skull, on one of the images it looked like a mushroom pushing her brain up. It had wrapped around her carotid artery, extended along the eustacian tube (damaged her facial nerve) and perforated her ear drum. The radiologist queried rhabdomyosarcoma or PNET, and referred her to Addenbrookes. The pain Amber had been experiencing had been due to the tumour pushing up her brain and extending out across the base of her skull. Our lives crashed around us, but at least we had answers, the pain was written across her face, over the next 12 hours her symptoms progressed and Amber began to vomit uncontrollably.

Amber was blue lighted to Addenbrookes the next day and suddenly every door seemed to open. Amber was admitted and it was a race to identify what the mass was, bone marrow samples, bone scans, many more MRI’s, CT’s and ultrasounds. Amber was bed bound and had a neuro check every 2 hours day and night. She was given anti sickness to control the vomiting and morphine for the pain, she was terrified to get up because of how sick it made her, so we would lift her legs and arms while she was in bed and dance and sing to Trolls and Moana. She was so happy and content as long as she had us with her, but most importantly her three favourite dumbo teddies.

Amber’s tumour was inoperable but it had perforated her ear drum so the biopsy was relatively easy, the surgeon was incredible and after the biopsy Amber managed to walk without being sick because they had manage to remove the bit that was affecting her ear. Two weeks after the first MRI we were given a diagnosis of Embryonal Rhabdomyosarcoma. Amber had her hickman line fitted and started chemo the next day. After each chemo, Amber ended up in hospital with fevers when she went neutropenic, and the weight simply fell off her and every day was a battle to try and get her to eat.

Amber endured 9 cycles of chemotherapy administered every 3 weeks over 27 weeks, at week 15 we flew to Florida for Amber to have proton therapy, which at that time was unavailable in the UK. Addenbrookes co-ordinated all of Amber’s treatment. It was wonderful in Florida, they started her on Gabapentin which really helped the symmetry of her face, she still couldn’t use the right side but the severity was no longer as obvious.

The chemo caused neuropathy and the strength in Amber’s hands reduced to 45%, she began to trip and fall over her own feet and tip toe walk another sign of the neuropathy. Amber had physiotherapy and occupational therapy to help strengthen her hands, her feet were cast to try and increase the dorsiflexion. The gabapentin also helped her neuropathy.

Although we were adding eye ointment every 2 hours Amber had developed an ocular ulcer because she wasn’t producing natural tears. Somehow Amber found happiness in every moment. She went to school in between chemo admissions, fevers and blood transfusions and managed to perform a dance with her friends for her schools talent show. There was barely a dry eye in the house after they performed.

Amber’s strength, courage and determination inspired so many people, her friends acceptance of her condition was incredible. Our lives had crashed around us but our family, friends and community were there and it was awe-inspiring.

Amber finished treatment in 2017 and her tumour was stable, she is now approaching 5 years post diagnosis and never ceases to amaze us. Amber has long term effects and damage from the tumour including permanent facial palsy, right sided deafness, no ear drum and neuropathy in her feet, but her incredible attitude and work ethic has helped her overcome every obstacle in her way.

We are some of the lucky ones, I just wish all children were as lucky.

What was your journey with cancer like?

I have never felt more terrified, desperate and lonely than when Amber was diagnosed. Yet at the same time inspired and awed by the incredible little 7 year old before me. Fear stalked every second and guilt began to lay heavy in our hearts as we watched helplessly as more families lost their children, an understanding that luck still has the hugest part to play in survival.
 
Someone asked me what Amber’s prognosis was – that question gets asked a lot more than you would think (and some people even asked it in front of Amber). I remember saying to this person that it was about 60-70% depending on what literature you read, they said “oh that’s good then”.  I nearly fell over and treated them to a lecture – yes those are great stats if you want a 1st or a 2:1 in your degree, but for children, if every child in a class of 30 was given those survival stats it would mean between 9 and 12 children would die out of that class of 30. Needless to say they didn’t think those figures were so great when put into the context of lives. 
The truth is we got our strength from Amber and her little brother. Amber had an amazing way of understanding and coping with her cancer, and Finlay the need to be with his sister playing games. She had been growing her hair all her short life, but it didn’t grow quickly and so when we sat her down and explained that the naughty lump in her head which had caused her face not to work properly, had to be treated with medicine that would cause her hair to fall out we all sat and cried. Amber was sad for only a couple of minutes before turning to her daddy and I, and telling us that is was OK because our dogs Angel and Bailey moulted their hair and she would moult hers, she never mentioned her hair again and we collected most of it up and laid it outside so the birds could use it in their nests just like we did with the dogs fur.
 
Amber had no concept of self pity, it didn’t occur to her, her focus was going to school, and our focus was helping her do exactly that when she was well enough. Amber was amazing, her knowledge, understanding and calmness amazed even the play specialists. As parents we watched her and her brother play, our hearts breaking while we plastered smiles on our faces to try and shield them from how we were truly feeling. Despite this, she always knew when we had been crying – I would come back from a chat with the consultant and she would look at me roll her eyes and say mum have you been crying AGAIN!!!

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

GP’s need to be more aware of childhood cancer and less focused on it’s perceived rarity. I want to see increased utilisation of accurate diagnostic tools such as MRI’s etc. Some children go months and months without a diagnosis but persistent pain should be investigated robustly sooner. I also want to see any child with Belle’s Palsy symptoms scanned as a priority to rule out cancer.

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