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Alice

Alice’s Arc was inspired by the ongoing journey of a little girl named Alice, diagnosed with stage 4 alveolar rhabdomyosarcoma, at the age of 3, in March 2015. She had 20 months of chemotherapy at GOSH and proton radiation in the US.  Alice spent one year in remission before her cancer returned in February 2018. She underwent 6 months of relapse chemotherapy and a specialist surgical procedure with brachytherapy, known as AMORE, in Amsterdam. Alice spent almost a year clear of cancer before masses were detected in her abdomen and pelvis in July 2019. There were no options left. Alice died, aged 7, in October 2019, over 4.5 years after her diagnosis.

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Alice's Insights

In her last few weeks alive, Alice made many insightful comments. She is the voice that drives our work everyday. One day, Alice, we will make sure that answers are found, so that children with rhabdomyosarcoma can be confident of growing up and leading a normal life.

 

I wish I had a normal life. I should be at school having fun with my friends.

I’ve got better twice before, I don’t need treatment this time, my body soldiers can fight the cancer.

I wish I could get better. Tell me all about this cancer. When will they find me a treatment?

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Alice's Story...

It took about 8 weeks for Alice to receive her diagnosis and start treatment. She presented with a small lump on her neck, she was completely healthy otherwise. The GP thought it was a lymph node infection and asked us to return in a week. The lump did not go away and it seemed to be growing before our eyes. On return to the GP, we were referred to our local hospital, where they diagnosed an infection and prescribed antibiotics. It still did not clear up and we were getting concerned. We decided to access our private local hospital and they did various blood tests, ultrasounds and prescribed further antibiotics and more appointments. After another few weeks, they suggested we visit an ENT specialist in London. He believed the growing lump was a cystic hygroma but felt an MRI was necessary to confirm this. The date for the MRI was a few weeks ahead but we pushed for this to be done earlier due to our increasing anxiety. The MRI revealed a solid mass and Alice was urgently referred to the oncology department at Great Ormond Street Hospital.

The next day, after an ultrasound at Great Ormond Street, the team told us the devastating news that this was a tumour – a rhabdomyosarcoma or a lymphoma. Alice was admitted a few days later and underwent four days of investigations and procedures including a biopsy, insertion of a hickman line, PET scan, CT, lumbar puncture and blood tests. On the 4th day the full diagnosis came – stage 4, fusion positive (PAX3-FOX01), alveolar rhabdomyosarcoma with the primary tumour attached to the submandibular gland in her neck with positive lymph nodes and a tiny tumour in her lung. She was given a 50/50 chance of survival over 5 years. At this point, the tumour was enormous and was compromising her airway so Alice’s treatment began the next day.

Alice’s treatment was led by Great Ormond Street Hospital in the UK and took her to the US and Europe, in order to access the most effective treatment options.

Her frontline treatment involved 3 cycles of in-patient IVADO chemotherapy and 6 cycles of IVA in-patient chemotherapy. She responded very well after the first 3 cycles and the tumour shrunk substantially and the lung tumour disappeared. This meant Alice was approved to travel to Florida, US, to receive 29 proton radiation sessions, at the University of Florida Proton Therapy Institute. She also received 7 sessions of photon radiation to her lungs. Proton radiation is a highly-targeted form of radiotherapy – the proton beams kill the cancer cells and cause less damage to surrounding healthy tissues. This is particularly relevant to young children so that long-term damage can be limited. Her chemotherapy was given at Wolfson Children’s Hospital, Jacksonville in conjunction with the proton radiation. We spent 11 weeks in total in Florida and returned to the UK for her final few rounds of IVA chemotherapy.

Alice’s response to this treatment was very encouraging and she underwent 12 further months of out-patient maintenance chemotherapy involving the drugs cyclophosphamide and vinorelbine. In October 2016, after 20 months of treatment and aged 5, she rang the end of treatment bell.

Over the next 15 months, Alice underwent MRI scans of her head/ neck and X-rays of her lungs every 3 months and these remained stable, until a scan showed some small changes at the primary tumour in the head/neck area. At this point, it was unclear, what this meant. Could it be changes as a result of radiation or was this the tumour activating again? Alice underwent an MRI, a PET scan and a CT which appeared inconclusive. However, the PET scan revealed several areas which needed further investigation. The decision was taken to wait a month and rescan. Following another MRI and PET, Alice had surgery to remove a suspect lymph node on her neck which turned out to be non-cancerous. Alice’s team at Great Ormond Street had been concerned about doing a biopsy on her primary tumour site due to the location near an artery leading to the brain. Several options were considered due to the inconclusive MRIs and the decision was taken to biopsy the area to find out if the changes were active rhabdomyosarcoma once and for all. Sadly, the biopsy, in February 2018, revealed active rhabdomyosarcoma cells. A relapse is beyond devastating news for a family and Alice’s odds of survival dropped to 8%.

At this stage, we explored a trial at the Royal Marsden Hospital involving a new inhibitor drug called Regorafenib alongside chemotherapy. However, the trial was closed as it was proving very toxic for some children and the laboratories needed to revisit dosages of the drugs in combination. Therefore, we had no choice but to access the relapse chemotherapy VIT at Great Ormond Street Hospital. This combination is unlikely to be curative unless combined with another type of treatment. In order for Alice to have the best chances of a cure, Great Ormond Street suggested a procedure in Amsterdam known as AMORE. This treatment is not available on the NHS and would need to be self-funded. Amsterdam agreed to look at Alice’s case if the tumour responded to VIT chemotherapy and subject to the tumour appearing no where else in her body. Thankfully, Alice’s rhabdomyosarcoma responded very well and the cancer was localised so she was approved for AMORE in Amsterdam.

AMORE was undertaken at Emma’s Children’s Hospital in Amsterdam. This was prior to the children’s cancer unit being moved to the Princess Maxima Centre in Utrecht, which is dedicated to treating children’s cancers. The procedure involved a major surgery to remove Alice’s tumour which was highly complex and risky due to it’s difficult location. She had rods inserted in to her neck in order to receive brachytherapy radiation. Upon completion of this surgery, Alice had a day to recover before brachytherapy commenced. This was undertaken every two hours for 15 minutes over three days and nights. This was gruelling and we weren’t allowed to be in the room when this was administered. During this time Alice contracted an infection and had to be treated with antibiotics. She remained slightly sedated during this part of the procedure as she was unable to move from her bed. Alice was then allowed a few days to recover before her next surgery where the rods would be removed and her face reconstructed, if necessary. She was very lucky and the Amsterdam team were able to close up her face successfully with no need for reconstruction. Alice remained in hospital, in Amsterdam, for a further two weeks to recover. We stayed in the hospital for just over three weeks and then returned to the UK, where Alice completed two further cycles of VIT chemotherapy. We felt elated when scans in October 2018 showed no evidence of cancer and Alice proudly rang the end of treatment bell for a second time.

She then entered a second phase of scanning every three months in the same way as the first time. Everyone was overjoyed with the results of VIT and AMORE and there was huge celebration with each set of clear MRI’s. Following a clear MRI of her face and neck in July 2019, we initiated a discussion about our concerns relating to Alice’s abdomen which had started a few weeks before. It appeared to be increasingly distended and we asked for an ultrasound. We were delighted about her clear scans of her face and neck and hoped this ultrasound was just a formality and a ‘normal’ reason could be found for her larger than usual tummy.

Unfortunately, the ultrasound found a large mass (size) in her abdomen, with masses forming around her bladder and pelvis too. This was impossible news to hear and for the next few days Alice found herself having a biopsy and MRI, PET and CT scans. Sadly, these showed extensive rhabdomyosarcoma (we had hoped it might be a different type of cancer since Alice had never had disease detected in this area – funny what you wish for) in the abdomen and pelvis areas which they would not be able to conduct surgery on. Blow after blow. In disbelief, we were introduced to the palliative care team and Alice was given weeks to months to live.

We started researching treatment options around the world and sought a second opinion in the US where an option involving surgery and HIPEC chemotherapy was a possibility. However, Alice was not going to be accepted for this due to the location and extent of the disease. Alice was becoming increasingly unwell as her stomach grew with fluid build up as a result of the tumours creating blockages. We were offered non-curative chemotherapy but Alice was adamant that she wanted no more chemotherapy and no more hospital. Experts believed that treating her at such an advanced stage was not in her best interests.

And so, we took Alice home in August 2019, under the care of the out-patient palliative team at Great Ormond Street Hospital, where she peacefully died on the 8th October 2019.

What was your journey with cancer like?

A rollercoaster ‘highs and lows’, beyond words, a learning experience, life-changing, shocking, exhausting and emotional. In some ways a beautiful insight in to how special life is and how important it is to seize the day and live a ‘full’ life experience.

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

Alice has left us with a mission. We want to see more new, curative treatment options for children at relapse. We want to see improvements in frontline treatments that can diminish the chances of relapse. We want to see kinder, better treatments that do not leave survivors with the devastating life-long side effects that we see now.

During Alice's Journey

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After chemotherapy blood counts drop dramatically making a child neutropenic. This means they have no immune system to fight off infections. If Alice’s temperature hit 38 degrees she went to our local hospital. Blood is taken to see if an infection is present. If the blood test is positive for an infection a long stay in hospital to recover and administer antibiotics is required. For example, chickenpox needs 10 days of treatment with a specific antiviral drug. Antibiotics are given through the Hickman line and usually infused 2/3 times every 24 hours depending on the infection type. If no infection is detected a stay of 48 hours is required to receive standard antibiotics. No temperature must be present for at least 24 hours before the child is sent home.

At such a young age Alice could not be expected to lie still for the multiple scans, procedures and radiation she received during the cancer treatment. Alice had a general anaesthetic each time she had imaging to assess the tumour e.g., Magnetic Resonance Imaging (MRI) and Computerised Tomography (CT), had a clinical procedure such as a biopsy, lumbar puncture to assess the cerebrospinal fluid, Hickman or Peripherally Inserted Central Catheter (PICC) line insertion (devices needed to allow infusion of chemotherapy to larger vessels in the body) and radiation treatment. With every anaesthetic there are certain risks to the child.

Alice had a Hickman line as it is less traumatic to receive treatment and have regular bloods taken through this method rather than inserting a cannula each time. Hickman lines are inserted in to a large blood vessel just above the heart. This enables chemo and antibiotics to be pumped around the body. Alice had two lumens coming out of her chest that were protected in a small bag that she wore. Having a Hickman line meant that Alice was at a greater risk of infections entering the body so they had to be cleaned regularly and you are unable to get the site of the insertions or the lumens wet. Therefore, Alice was unable to go swimming for 20 months or take a proper bath. Alice also got several Hickman line infections which resulted in long stays in hospital to treat them. Community nurses took bloods using the Hickman line twice a week throughout Alice’s treatment to monitor blood counts. This helps to assess whether Alice was well enough for chemotherapy and when to be extra careful going to public places where infections could be caught. 

VIT chemo comprises Vincristine, Irinotecan and Temozolomide and is given for 5 days consecutively every 21 cycles. Vincristine is administered as a push, irinotecan as an infusion and temozolomide in tablet form. It was very difficult to convince Alice to take the tablets and have the infusion of irinotecan as she was aware that they made her sick.

This involved 4 chemo drugs called Vincristine, Actinomycin D, Ifosfamide and Doxorubicin. The first two drugs are administered via an injection in to the Hickman line. The second two are infused in to the Hickman line over a few days and nights. At the same time hydration is also infused to flush the toxic drugs out of the system. This means the child is hooked up to a machine for a number of days unable to move or play properly and also feeling very ill as the drugs take effect. All the hydration makes the child need the loo very frequently so they are unable to sleep well. The drugs were given for 8 months every 21 days over the course of 4 days and 3 nights. 

Alice went to Jacksonville, Florida’s UF Health Proton Therapy Institute for 11 weeks to receive this treatment as it isn’t available in the UK yet. This was funded by the NHS as part of her treatment protocol. Over the course of 6 weeks Alice received proton radiation every week day. Anaesthetics are required as it is vital that the child is completely still to ensure the precision of the proton beam. Alice received chemotherapy alongside this at Wolfson Hospital. Proton radiation is preferable for children with some brain tumours or cancers located in the head, neck or spinal areas as it is highly targeted and causes less damage to healthy tissues than conventional radiation.

Chemotherapy makes blood counts drop dangerously low. Drops in red blood cells and haemoglobin cause extreme feelings of fatigue and lethargy. If it drops below a certain level a blood transfusion is conducted using the Hickman line. This typically takes 4 hours. Similarly if platelets drop below a certain level a platelet transfusion takes place. It is very common for children receiving chemotherapy to receive these transfusions frequently.

This procedure involved an 8 hour surgical procedure in which the tumour was removed and rods for brachytherapy were inserted. The next stage involved 3 days of brachytherapy administered every 2 hours for 8 minutes each time. During this time the parent had to leave the room. She then underwent another surgical procedure to remove the brachytherapy rods and reconstruct the area where the first surgery had taken place. Alice was unable to eat and kept sedated for some of this procedure.

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News

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

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