Neive Warwick

Neive, aged 5, was diagnosed with embryonal/fusion negative parameningeal rhabdomyosarcoma, in August 2022. Her care is led from Birmingham Children’s Hospital and she has endured nine rounds of intensive chemotherapy & proton beam therapy. She started maintenance chemotherapy in April 2023 but sadly her end of treatment scans in September 2023 showed disease progression in the brain and spinal fluid. Neive went home on palliative care to be with her family. She passed away on 24th October 2023.

Neive's Story...

Neive was 5 years old and had just started Year 1 when she was diagnosed with High-risk Embryonal Parameningeal Fusion negative Rhabdomyosarcoma. She was an energetic, curious, happy little girl prior to this and had never stepped foot in a hospital when in August 2022 she started having disturbed nights, headaches, a squint, subtle facial palsy’s and generally just not herself.

After 3 weeks of agonising back and forth visits to the GP and local hospital they finally agreed to perform an MRI of her brain as we felt she was displaying signs of a brain tumour.  Prior to this we were told it was a water infection, growing pains etc etc. Neive’s tumour was discovered during the MRI, a 5cm tumour. It wasn’t in her brain but in the Pterygopalatine Fossa area and inoperable because of its complex location. That’s the moment her and our lives changed forever.

Neive went on to have 9 rounds of IVA chemotherapy at Birmingham Childrens Hospital and then 6 weeks of Proton Beam Therapy at The Christie in Manchester. She tolerated this reasonably well despite the toxicity and painful skin reaction to the protons. Her strength and determination was admirable during this period and her will to live shone through brighter than anything.

Neive’s end of intensive treatment scans in March 2023 were clear other than some residual tissue which they assured us was common. She commenced maintenance chemotherapy in April 2023 combining oral Cyclophosphamide and IV Viborelbeine. This had some challenges and caused her blood count to drop lower than expected and she had to have the dose reduced but after this hiccup life resumed for her, we enjoyed family holidays, theme parks trips, open mic sessions and plenty of parties – lots of parties!

It was in June 2023 that things took a turn for the worse for Neive, she became unwell and generally not herself and started to display symptoms that she presented with upon her diagnosis. She began having severe headaches accompanied by nausea and vomiting, disturbed nights and withdrawn from everything she use to love doing. This went on for a few weeks and after numerous visits back and forth to Oncology they decided to perform a lumbar puncture as they feared Neive may be relapsing. The lumbar puncture provided immediate relief to Neive’s paralysing headaches and it was noted that her opening pressures were 54 – severely high. Her CSF testing came back clear of any cancer cells.

After a week the headaches crept back in along with the nausea/vomiting and again she had a lumbar puncture performed to relieve the pressure. CSF was tested again and yet again, clear of any cancer cells. This went on for a few months, lumbar punctures typically every 10 days and gradually things getting worse more quickly. She was started on various medications to help reduce her CSF such as Acetizolomide and Furosemide all to no avail. We felt like we were going round in circles. Neive wasn’t getting any better and neither were the high intracranial pressures and symptoms. What was going on? Could they missing something?

Eventually they diagnosed Neive as having Idiopathic Intracranial Hypotension although she wasn’t typical as it predominantly affected middle aged, obese women. This didn’t sit right with me and I never truly believed that was what Neive was suffering with, there had to be a cause for such a slight little girl who was underweight to have such high pressure. Interestingly, an MRI Neive had in July 2023 showed dural enhancement of her brain and spine but this was believed to be down to the repeated lumbar puncture’s not the presence of tumour.

As the weeks went on, Neive continued to decline and one evening in August 2023 she had 3 x seizures in a row, it was then that the Neurosurgeons intervened and  rushed her to theatre to have a ventriculoperitoneal shunt fitted to save her life and relieve her brain of the high pressure. We were pleased that finally she may be able to return to some sort of normality and be free of the constant headaches and vomiting which couldn’t be controlled. This wasn’t the case.  Although the headaches were relieved the other symptoms persisted and she also developed a squint , double vision along with left sided facial weakness (all the symptoms she presented with upon her diagnosis.) We were baffled as were the Oncology team as to what was causing this (although I had my suspicions) as all the testing of her CSF had come back clear of tumour along with MRI scans with the exception of the dural enhancement.

Sadly, Neive’s end of treatment scan in September 2023 showed widespread Leptomeningeal disease of her Rhabdomyosarcoma. The high pressure was due to this all along. The cancer has returned and aggressively. Her primary tumour site remained stable. There are no curative treatment options left now and Neive is received palliative care at home surrounded by everyone and everything she’s loved in life.

On 24th October 2023 at 7.07pm Neive drifted off peacefully to heaven with her Mum lay next to her holding her hand talking to her about how she will be reunited with her beloved pet dogs Bailey & Billy and how she will have her beautiful plaited hair back again. Neive is finally at peace and her tiny body can rest now. We will love you and miss you every second for the rest of our lives.

What was your journey with cancer like?

Throughout Neive’s journey she has fought valiantly, courageously and never been phased by any of it although she has been dealt a cruel hand in life. She became a big sister to Molly in January 2023 and she has taught her so much in such a short space of time, even now we can see Neive’s light and love within Molly and I just know Neive will live on within her little sister.  Neive has sang, danced and laughed but most of all she’s continued her love of life and that’s what we plan to do with the limited time we have left now with our precious, Neive.  Neive will be remembered for her love of animals and flowers, her beautiful singing voice, her perfect face, her lovely plaited hair she was so fond of and her kindness to all. We’ll love her, we’ll sing and we’ll dance, until the very end.

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

From June 2023 – August 2023 Neive was displaying signs of a relapse but all the attempts to discover this pathologically came back clear and this is one thing I can’t accept or quite understand. Her MRI’s were clear and CSF findings clear other than the noted high intracranial pressure and dural enhancement. The cancer took months to present itself through current screening mechanisms, although the symptoms and signs were there. Could something have been done preventatively at the point of her symptoms presenting again and high IC pressure/dural enhancement? I don’t know but this is one thing I would like there to be more research into and more knowledge to be able to tackle early and improve outcomes for our precious children.

I would also like to see more curative options available for children at the point of relapse with particular research into why relapse occurs and having the knowledge to tackle it more effectively for the long term.

News

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

A team of 105 runners comprising scientists, doctors, surgeons, nurses, pharmacists, families, friends, parents all ran together.
This incredible community event marked Mollie’s five year anniversary of her diagnosis with rhabdomyosarcoma.
An insight into life in the laboratory for Post Doc, Dr Christina Burke.
We are delighted to publish our Annual Report covering FY21/22.
Around the Wash Spiderman themed cycle in memory of Elliott Peto.
This high profile news coverage was showcased on 10th May 2023.
An article focussed on the Cancer Grand Challenge, NexTGen, featuring co-founder, Sara Wakeling.
On the 11th March 2023 families, medical professionals and scientists came together as a community.
The launch took place at a special memorial assembly at Elliott’s school.
We will be opening as a 501(c)(3) in 2023.
Press coverage received in Sunday’s Observer on 15th January 2023.
The sale of gold bath bombs throughout UK Lush stores raises £150K.
Pilot findings published in an article in the Journal of Clinical Oncology.
Our ‘Say My Name’ Season’s Greeting’s card are now available to buy.
Epic cycling challenge for Amber’s Arc raises over £11K.
Telling the stories of the inspirations behind our work is the focus for CCAM 2022
Alice’s Arc referenced in Washington Post news article discussing research in children’s cancers
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 £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