Elsie Woolford

Elsie, aged 3, was diagnosed with metastatic Embryonal Rhabdomyosarcoma, right neck primary parameningeal site with pulmonary and vertebral (T2-L5) bone metastases, in September 2022.

Elsie’s care was led by Leeds General Children’s Hospital where she underwent 9 rounds of intense chemotherapy and 28 sessions of radiotherapy.

Elsie started maintenance chemotherapy in April 2023. Sadly, end of treatment scans in July 2023 showed disease progression to her lungs. Elsie started her relapse chemotherapy straight away which seemed to be going well initially, but in November 2023, we were told that the treatment wasn’t working and that no further treatment options were available. Elsie came home on palliative care and fell asleep on January 3rd 2024.

Elsie's Story...

Elsie was 3 years old when she was diagnosed with high risk ERMS right neck primary parameningeal site with pulmonary metastasis. Elsie had just finished with her childminders for the summer break and she was full of life, fun and always energetic. You would never believe that the following day her life would change forever.

Elsie started with a high temperature and was tired and seemed unwell, this didn’t seem unusual as often children of this age get high temperatures. I just thought it would be something that would pass. The next day Elsie’s temperature had settled down, but Elsie still didn’t seem herself, she wasn’t eating and was lethargic. We took Elsie to see the GP, where on examination a lump was found on the right side of her neck. The doctor asked if this was normal for Elsie at which point, I said “no” as I had no idea it was there. The doctor thought it was probably a swollen lymph node due to an infection and as Elsie’s right tonsil was enlarged, we went home with a week’s course of antibiotics and told to go back if there were no improvements.

Elsie continued to be distressed, wasn’t eating and was tired all the time, the lump was getting bigger, so we had another trip to the GP. The doctor said to carry on with the antibiotics and that she would put in a referral for Elsie to be seen by the paediatric doctors at the local hospital. Another few days passed, and we just felt Elsie wasn’t getting any better, so we took her to the local hospital A&E department. We were seen quickly, and the doctors said that Elsie needed to stay in hospital for further tests. Elsie was admitted to the children’s ward where we she was seen by several doctors, no one really seemed clear on what was wrong with Elsie. One doctor was saying mumps and another was saying that it could be an infection. Elsie started on some IV antibiotics and spent 3 nights in hospital, after this she was transferred to another hospital that had an ENT consultant who could hopefully get to the bottom of what was going on. Several scans were carried out including an ultrasound and a CT. Elsie was distressed throughout the scans and unfortunately the images weren’t clear. The ENT team were pretty sure that Elsie had an infection that needed to be drained so she was booked into theatre to have the infection drained. It was during the procedure they realised Elsie didn’t have an infection and this was when they took a biopsy and removed some lymph nodes for further testing. Elsie was discharged after 10 days while we waited for the results. A few days later we got a call to say that no results were back, but could we take Elsie straight away to see an oncology consultant over at LGI. We were told not to worry as no diagnosis had been made.

We went straight to LGI where we met the consultant, he seemed to think Elsie was showing signs of Lymphoma. Elsie went for further scans, where nodules were found in her lungs. Another biopsy took place. We were then discharged and left waiting for results over the bank holiday weekend. We returned to LGI the following Tuesday where we were told that Elsie had cancer, it wasn’t lymphoma liked they’d initially thought and needed further testing to establish what it was. Later that week we were told the devastating news that Elsie had ERMS which had sadly spread to her lungs.

We were told that due to the nature of the primary location, it was in operable. Elsie went straight to theatre, where she was fitted with a central line, an NG tube and a bone marrow aspiration was done.

Elsie went on to have 4 rounds of intense chemotherapy called IVADO then 5 IVA . In December 2022, Elsie was fitted with a gastrostomy tube in preparation for her radiotherapy. Elsie then went for planning at the Christie in Manchester where she was to have proton therapy but sadly this was cancelled as cancer was found on Elsie’s spine, so there were too many areas to treat. Elsie went on to have 28 sessions of radiotherapy at St James’ hospital in Leeds. Elsie became quite unwell during this time given the amount of radiation she was having and the last round of chemotherapy on top.

Elsie finished her frontline treatment at the end of March 2023 just after her 4th Birthday. Elsie went on to maintenance chemotherapy in April 2023 involving oral cyclophosphamide and vinorelbine which made Elsie’s blood counts drop, so she was off the treatment more than she was on it.

Elsie had her end of treatment scans in July 2023 where we were told that Elsie had disease progression to her lungs. Elsie began VIR protocol on the FAR-RMS trial. Elsie managed the first course ok but then became very unwell with the side effects causing severe diarrhoea and a long stay in hospital. during this time, we were unable to get Elsie to take the oral chemotherapy and as she was on the trial, we were unable to administer this through her feeding tube. We had to make the decision to come off the trial and move onto the standard relapse protocol of VIT which allowed us to administer the oral chemotherapy through the feeding tube. Elsie had a CT scan in September 2023 which showed a reduction in the lung nodules and continued the VIT protocol but in November 2023 her blood counts just wouldn’t recover and her chemotherapy kept getting put on hold, this happened over a couple of weeks. Then, by the end of November, Elsie seemed to be unwell, lethargic and had a dry, persistent cough.

We took Elsie to hospital as we were concerned about her, Elsie had an x-ray and they found Elsie’s left lung was full of fluid. She was blue lighted to LGI where she had another x ray, we were then told that Elsie’s treatment wasn’t working and that Elsie had pleural effusion and the cancer was causing fluid to build up on her lungs. We were told that no more treatment options were available. Elsie was fitted with a chest drain to improve her quality of life and we brought Elsie home on palliative care. We were told we would have a few months with Elsie, we had so much planned, lots of “yes” days and to make as much magic as we could. We wanted to take Elsie to see the princesses at Disney land but she we couldn’t fly or get insured to travel.

Elsie had some good days, but we were back and forth to LGI with the chest drain as it kept getting blocked. After several times unblocking it, we still continued to have problems, so another x ray was done, Elsie’s chest drain was no longer working as the whole left lung was now solid tumour. On the 21st December 2023, we were told that Elsie wouldn’t make it to Christmas day. We made the decision to bring Elsie home where we were supported by a Macmillian outreach nurse. Elsie loved home, it was her safe place.

Elsie continued to fight and show strength as she always did and she fell to sleep at home on 3rd January 2024 in Mummy’s arms, surrounded by all the people she loved and all that loved her.

What was your journey with cancer like?

No one can ever prepare you for the news that your child has cancer. We weren’t prepared, I mean how can you be? Its life changing for everyone. We felt so afraid we had entered a world that we didn’t know existed. It was scary, we had so much to learn and there was so much information to take in.

Seeing Elsie so unwell from the treatment was heartbreaking but it was the only hope we had in getting Elsie better. We always held onto hope that Elsie was getting the best treatment, and that she would get better in time.

Not living close to our oncology hospital, we had to have a shared care package this often came with its challenges, and I always felt that Elsie was put under more anxiety as often would have to be seen by local hospital, to be then transferred to LGI meaning lots of repeat examinations. Long stays in hospital meant been away from home and the rest of the family, which we all found difficult. We always lived in the moment, one day at a time one foot in front of the other. As we found thinking too far ahead was too overwhelming.

Elsie always showed such bravery, she is a true inspiration, and she has taught us all so much throughout her journey. She always wore the biggest smile and continued to be her best self. She had the biggest imagination; she would sing and dance and even on the hardest days she pushed herself. She wasn’t afraid the be heard. She was often referred to as sassy and feisty. We loved that Elsie held onto this confidence.

We met so many families along the way, these families become your friends. These are the people who really know how you’re feeling who can relate to every bit of anxiety. Something else that we were really grateful for in Elsie’s journey was the dedicated support of Candlelighters.

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

Faster referrals and GP’s to have a better understanding and knowledge of childhood cancer.

Better shared care for families that live away from oncology hospitals and more knowledge of cancer from consultants in a general hospital.

Kinder treatments for children

More treatment options at point of relapse



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

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Epic cycling challenge for Amber’s Arc raises over £11K.
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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.
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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
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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
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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.
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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
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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
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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
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23 parents ran the Watford Autumn 10K in support of Alice’s Arc
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8 cyclists rode over 240 miles from London to Paris over three days to raise funds for Alice’s Arc
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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.
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We are delighted to be featured in an article in the ICR’s Spring 2019 edition of their Search magazine
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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.
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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
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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