Sia Schoeman

Sia was diagnosed with stage 4 metastatic rhabdomyosarcoma in June 2021. The prominent tumour was on her lower left leg, but the disease had already spread to her spine, lungs and bone marrow. At first, Sia responded to first line treatment, but then it stopped working and Sia started second line treatment in December 2021, but by the end of January 2022 the disease had mutated and there were no treatment options left.

Sia went to heaven on 4th of February 2022, only 8 days after we learned that she was terminal and 12 days before her 5th birthday.

Sia's Story...

One Sunday morning, in May 2021, Sia started complaining that her leg was hurting. This led us to discover a swelling in her lower left leg, just below the calf. I phoned 111 and we went off to A&E for X-rays and blood tests – all of which came back normal. A follow up on the Tuesday was discussed before we left to come home, but this got pushed out to the following Thursday. At this point I already realised that it was more serious and got Sia seen by a private doctor that same week. He requested an expedited MRI appointment through the NHS, however this was complicated by the fact that it had to be done under a general anaesthetic because Sia was only 4 years old. It took 2 weeks to get a consultant appointment at the children’s clinic and another week from there to get MRI done. The same evening that the MRI was done we had a video call with the consultant doctor that saw Sia at the children’s clinic, where she confirmed that it was a tumour and that we needed to be at the oncology ward in John Radcliffe Children’s hospital in Oxford the next morning at 9am. This was supposed to be a day visit, however when they tested Sia’s blood her calcium levels were off the charts and she was admitted to hospital. This visit turned into almost a month’s stay.

They needed to get her calcium levels down before giving her the general anaesthetic as this can be harmful for her heart. She spent 2 nights in PICU as they started her on Prednisolone as cancer treatment for lymphoma – as this was the cancer they were expecting – but also to help bring down the calcium levels. On Monday 14 June the biopsy and bone marrow aspartate were done and Sia got her wigglies (Hickman line). The week that followed was awful. Sia was in a lot of pain with shooting pain down her legs. On 17 June we finally got the diagnosis. It wasn’t lymphoma as they initially thought, but rhabdomyosarcoma. You know it’s not good news when the doctor consultant begins with “I’m sorry it’s not lymphoma” – not that one cancer is better than another, but lymphoma has more treatment options available. Without chemotherapy Sia would be in increasing pain for the next few months until she passed away, so choosing to proceed with chemotherapy was the kinder option, and she started on IVADo the next day. Since she was already in a bad way, the chemo side effects were severe. She got really bad mucositis and was unable to eat or take oral medication, along with a herpes infection and thrush. We didn’t know if she was going to pull through, but she did. From there she started responding to the treatment and we made it home 2 days before the next cycle of chemotherapy was due.

To everyone’s amazement, she responded beautifully to the treatment and got stronger. She even managed to start school in the September. At the beginning of December – the weekend before she was due her final intensive chemotherapy cycle – I noticed the primary site tumour on her left leg were getting bigger again and feeling warm to touch. Tests confirmed that she had stopped responding to the first line treatment. The bone marrow was now clear, however the MRI and chest CT scan showed a thickening on the lining around her lungs. We started on second line treatment, and at first it seemed like Sia was responding – her mobility started to improve along with her mood – but then I noticed new tumours appearing. In January 2022, we were struggling to get her pain under control and she started vomiting and complaining of severe headaches.

She tested positive for Covid on 19 January 2022 – and I felt relief as it explained some of the symptoms we were seeing. She was hospitalised on 21 January for vomiting and a line infection. The vomiting continued and a CT scan was done that showed that the ventricles in Sia’s brain were bigger than expected for someone of her age. She was transferred to John Radcliffe hospital on 25 June for an MRI and on 26 January we received the news that there were no further treatment options available to her and she only had a few weeks left with us. The cancer had mutated and created something like a sugar coating all over her brain, which stopped the spinal fluid to be absorbed and was building up in her brain. This was the cause of her headaches and vomiting. Only 8 days later, Sia passed away.

What was your journey with cancer like?

Getting to diagnosis took a month – and that was the most difficult and traumatic part of our journey. Sia’s cancer was extremely aggressive and had already spread to other parts of her body, including her bone marrow, spine and lungs. Due to her being so unwell, she had adverse reactions to the first round of chemotherapy that kept us in hospital until 2 days before her next cycle was due. She needed blood transfusions before each of the first 5 cycles to get her blood count “numbers” up in time for the next round of chemotherapy. She struggled with eating initially, but having the NG tube was equally distressing for her, but in a different way and we decided to remove the NG tube after a week.

Sia was an absolute rockstar and faced everything head-on, right up to the end of her life. The chemo made her tired, but she still managed to start ‘big school’ despite this and didn’t want to miss out on a single moment of living life to the fullest. She was able to live a relatively ‘normal’ and ‘healthy’ life from August to December 2021. In December she became refractory and was more tired than normal due to the change in chemo drugs. This continued until the symptoms of the cancer mutation started in mid-January, when the headaches and vomiting started. It was only 2 weeks from this point (8 days from getting terminal prognosis) until she passed away.

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

We would like to see a greater awareness of symptoms to look out for, both for parents and GPs. There needs to be a fast-track procedure in the NHS to get to diagnosis quicker. Note though that a quicker diagnosis won’t necessarily result in a different outcome, but it would make that initial stage less traumatic for the family.

Also, more availability and speed for securing an MRI scan under general anaesthetic, as this also caused a delay in getting the diagnosis.

News

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

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 £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