Dexter Constantine-Tatchell

Dexter was just five when he was diagnosed with parameningeal embryonal rhabdomyosarcoma, presenting in the nasopharyngeal. It grew aggressively out of his right nostril over a three-day period, after an agonising fight for him to be seen by medics. On December 5th 2019, we were told it was cancer and had to immediately start emergency chemotherapy. Dexter went on to have nine rounds of IVA, 33 days of intense proton radiation therapy, numerous biopsies’, lumber punctures and blood transfusions and finally six months of maintenance chemotherapy which gave our family 15 months of hope that the tumour had been killed off. Dexter’s tumour was deemed inoperable in frontline treatment. In March 2022 his three-monthly scans, showed aggressive growth from the original tumour and we were told he had likely a year on chemotherapy but on May 6th, 2022, scans proved that the treatment ineffective. We were given four to six weeks together, Dexter fought on and continued living until he passed away on 27th July 2022. He was seven years old.

Dexter's Story...

Dexter turned five on August 18th 2019, and coming up to Christmas he was tired and grumpy, which we had thought was because being the youngest in year one was taking its toll. Unbeknown to us cancer was rapidly eating through the inside of our baby’s face. On Saturday the 30th of November 2019 he had what looked like a weepy eye, I went and got eye drops and as he tilted his little head back across my knee, we saw this red fleshy bulge protruding from the top of his left nostril. We googled it and thought it may be a nasal polyp? Sunday evening, we were all in our Christmas pj’s to celebrate the 1st day of the Christmas season when Dexter’s nose suddenly exploded. He’d never had a nose bleed before and suddenly he was covered in blood – the suspected polyp had grown. Monday morning first thing we’re in the GP’s office, listening to him argue with some junior doctor, our GP wanted Dexter to be seen that day and the doctor said it’s probably a piece of Lego shoved up there and we’d have to wait to be seen by an ENT doctor on the Thursday. We left with the parting advice that if Dexter was to have another nose bleed to take him straight to A&E. The next evening, I was in A&E for four hours with Dexter curled up on my lap sleeping while we waited for him to be seen. A doctor attempted to seal the tumour with silver nitrate unsuccessfully, and it bled through it spreading black across his face, his nostril was growing swollen and bulbus under the expanding tumour. We were sent home and told to come back in the morning at 8am because there was only one bed left in Peds and that had to be kept for a ‘seriously ill’ child.

Dexter was admitted the next morning, the doctors appeared disinterested and kept insisting the large mass was a reaction to Dex shoving Lego up his nose, despite him telling them he wouldn’t do that. He was given a CT and MRI scan around 3pm, we were then put into a private room and for nine hours, no nurse or doctor would communicate with us, everyone we asked said ‘a doctor will come and see you.’ At 12.30am in the dark hours in the morning a doctor finally came to see us, Dex was drifting in and out of consciousness and he explained they had discovered a very large cancerous tumour and had been conversing with Southampton because it hadn’t been seen in Poole. He was to be blue lighted to Piam Brown ward at 8am and we should expect our lives to be turned upside down and we should bring his siblings down to say goodbye because there was no guarantees Dexter would see them again. I was heavily pregnant and in a state of shock.

Arriving in Southampton, we settled into the ward and that evening they performed an emergency biopsy and put lines in to allow emergency chemotherapy to start the next day. Dexter was upset by every medic and those first 14 days of waiting to find out what kind of cancer it was, while friends and family sent gifts and support, were filled with such sorrow. I had no idea if we would be spending Christmas in hospital or if it would be our last Christmas.

On the 14th of December they believed it was rhabdomyosarcoma and that it looked this way because of how aggressive it was. They released Dex on the 17th so he could come home, but by the 18th we were back in hospital because he was neutropenic. The morning of the 19th, Dex sat up early morning and to my horror all of his hair stayed behind on the pillow, I cried, his identity had been so tied to his thick blonde hair, I had no idea the effect it would have.

We had to stay in and have transfusions, hospital life was new to us and the doctors played down how grave a situation we were in – who wants to deliver bad news at Christmas? We were back in Southampton for round two of chemotherapy on the 27th of December and it was then, that our consultant talked to us honestly, there was no sugar coating how bad a situation Dexter was in. His tumour was aggressive and large, it had eaten through and around intricate parts of his face, to the bottom of his brain plate and to the top of his palate. He was high risk; it was inoperable, and she felt that they were still treating to cure, but it was a challenge without surgery. Looking back, it was an impossibility.

Jack and I were besides ourselves. Jack really believed that microsurgery, to get any of the tumour out, debulk it was better than not too. He believed that even without clear margins, the chemotherapy, and the Proton Radiation therapy, which was our only option would be more effective if some of the cancer was removed. We were told no at every turn, every ENT doctor refused to touch it. Radiation was the only option.

Dexter was one of six, I was heavily pregnant, the only Proton centre in the UK in Manchester was open to accept Dexter for Proton radiation Therapy and it was vital he had a place, or we’d be sent to Germany. Luckily, they found a place for him, and requested that he had a feeding tube because the Radiation treatment would burn his mouth so much he wouldn’t tolerate eating. With the painful tube protruding from his stomach, he had three days of chemotherapy in Southampton before we drove up to Manchester for radiation to start on March 5th, 2020. Two weeks later the whole country went into lockdown due to Covid 19. Again, we had fortune on our side and Dexter’s treatment continued, despite everything changing around us and the hospital fighting to stay open. On the 18th of March, Jack and I switched, and I came home to have a c-section at the end of the month. Dexter endured 33 magic sleeps, an infection, 2 blood and platelet transfusion, 7 days stay at Manchester’s Children’s hospital during a pandemic, and a long drive home.

Radiation was promised to be a miracle cure, that it would melt the tumour away, maybe making surgery possible. But when the baseline scan arrived in June, they told us it hadn’t worked, the tumour looked barely damaged, had shrunk very little in size and we were out of options. The only thing left was to get a PET scan in London to see exactly what it was up to.

The PET Scan confirmed it was docile, meaning no cancerous activity and we were elated. We believed it was dead, after seeing the brutality of the treatment and we rejoiced.

Now we had to go through six months of maintenance chemotherapy, pumped in through his feeding tube every day and manage the side effects of the barbaric treatment. After a year we could remove the tube and lines from his battered body. When faced with horrific cancer, unthinkable treatments, and surgeries, its strange how as parents we’re conditioned to believe that anything is better, even though his body was painfully thin and battered, threaded with lines and feeding tubes, scarred with sores and previous subjections. His limbs were floppy from vincristine and his eyes burned at any show of light from radiation, he had daily mucus in his nose and throat, he couldn’t breathe out of his nose and his nostril had collapsed, his teeth hurt, his bones in his face ached, he lacked energy, Dexter couldn’t manage full days at school and was fatigued and suffered horrendous night terrors. The pleasure of food was lost, some foods he couldn’t face, he was deaf in on ear and had fluid behind the other and his concentration was effected, this was his everyday life after cancer and the treatment on offer and we thought of him as well for the 15 months we managed all of the symptoms, because it was better than the rhabdomyosarcoma and we were grateful to have him.

Then in January 2022, I took him to an ENT specialist at Poole, he had sent him for hearing aids and recommended grommets and stints in his nostril, because his scans had been stable for over a year he scheduled surgery. I hadn’t heard from Dexter’s consultant, so I emailed to make sure she was aware, which she wasn’t, and so cancelled the surgery, saying we’d wait till the scan in March before deciding to operate. She ran extra CT scans and formations in the MRI machine to make sure all was well, however,  the extra scans showed that the cancer had returned and was growing further back towards Dexter’s brain. I thought we still had options, we planned a biopsy but Dexter contracted Covid and they delayed everything by two weeks. The biopsy found no cancer because the ENT doctor didn’t know where he was looking. 2 weeks later another surgery was planned to put a new line in followed by another larger biopsy in which Dexter then had a neurosurgeon use microsurgery to non-invasively go through his nose. Cutting through the back of his nose he debulked the original tumour, however, the new part of the tumour had grown round the arteries leading to his brain and he didn’t risk touching it. Dexter recovered extremely well with no adverse side effects, but Jack and I were outraged that no surgeon would perform this operation during front line treatment, and would in relapse. When there was no hope of saving his life, they were happy to take risks, now that the tumour was too large to be stopped.

Dexter started chemotherapy, lacking one component so he could go on a trial. Dexter probably had a year left with us and there was no hope of his survival, it was crushing to accept. We went for the scans required where the results came back confirming the rhabdomyosarcoma was growing rapidly despite the chemotherapy. We were told that any other drugs would likely be ineffective and hurt Dexter more than the cancer, so Jack and I made the devastating decision to stop treatment and make Dexter’s life the best we could for as long as we could.

Palliative care started; we made the decision to have Dexter at home with us as a family. He was given 4-6 weeks, but he continued for 16 weeks, every day getting up, picking up his little rucksack containing his medication, and dragging himself downstairs every day to be with us all, being together made us happy. He was courageous, determined and he never complained.

Dexter got up and fought every day until the very last day when he died with Jack and I by his side on the 27th of July 2022, at 17:45pm – undoubtably the bravest and most deeply heart-breaking thing we have been unfortunate enough to witness.

What was your journey with cancer like?

Jack and I found the journey very frustrating. As parents your immediately being managed, being drip fed information they believe is beneficial for the time. Jack and I are realists and we wanted to know; we weren’t given a true break down of the severity of Dexter’s situation until after the Christmas period and this was a shock because before Christmas, they were being careful about how to manage us.

We felt that the options available are based on such unusable statistics for such a rare cancer that doesn’t cater for making a truly bespoke treatment. You are in a hurling medical machine where the doctors have their MDT meetings, the experts all look and talk over the case and we as parents are presented the route of treatment, there’s no discussion or inclusion and as parents your requests for maverick approaches that break out of the protocol that relies on statistics and fails, often is shut down.

We were so naïve, we hadn’t met anyone who’d dealt with childhood cancer and we did our own research but ultimately we put our faith in the medical system that proved, really Dexter’s cancer didn’t fall in the remit of an ENT surgeon or a neurosurgeons anatomy. It’s a grey area so these doctors are guessing, there’s no expertise to be found. We should of looked outside the box, had less faith that the conventional route would save him because it was frustrating and ultimately not successful. It felt like a journey in which the medics had control of us, but not the cancer, even as the parents of the child in question we were not included in decision making or given options outside of the terrible statistics offered by our consultant. The only area we had control of was how we wished Dexter life to be during his end of life care. It was the only time we had true consideration and control on how the care and treatment around Dexter should be, and it was the one scenario we never wanted to happen.

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

We would like bespoke treatment based on individual children and the way they personally respond to chemotherapy and treatments. We would like parents to be included in treatment discussions, so that our valid opinions can be considered. There’s a small pool of statistics our medics pull from, they often end up with the same outcome and braver surgical options should be explored in frontline treatment, it’s too late to only attempt riskier options in a relapse setting. I also think parents should be made aware of the fact that when the doctors talk of holding back 30 percent toxicity in case of relapse, this isn’t frontline strength chemotherapy and the lifesaving options have often been exhausted by this point, because we were shocked to learn on relapse, we literally had no options.

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