Mollies Arc

30/03/2026

A timely reminder ………
If you have ANY concerns regarding your child’s health or appearance you must seek medical advice. Especially with any of the childhood cancer ‘red flags’
Mollies symptoms were incredibly subtle. A slight change in her left eye. A slight droop of the eyelid and a difference in the position of her eyeball that only I noticed.
Quite often now, with busy life, and a stretched NHS it can feel easier to resort to the likes of chat GPT for advice. I do it! And it can be really reassuring.
Here is an example why not to! A photo of mollie less than 48 hours before being admitted to hospital. With a clear droop of her eyelid. Chat GPT ‘eyes look clear and alert’ and nothing in this image suggests ‘acute medical concern’
❌ WRONG ❌
This very subtle droop of the eyelid was the only symptom of a deadly tumour growing on Mollies skullbase. At this stage it had impacted cranial nerves causing blindness and this subtle droop in her eyelid.
Always get ANY concern you have with your child’s health checked out by a medical professional. You are never wasting a doctor’s time even if it turns out to be nothing. Trust your gut. It’s rarely wrong

25/03/2026

This is progress!!!! Research resulting in two trials opening!! Amazing work 👏🏻👏🏻

At the beginning of March 2026, I attended the Annual Cancer Grand Challenge Summit in my role as Patient Advocate for the team NexTGen. This conference involves a scientific review of the project, witnessing the new challenges set, hearing progress on the other challenges and mixing with a global network of scientists, clinicians and advocates.

Simply put, NexTGen is tackling the complex problem of solid tumours in children through the development of next generation T-cell therapies for children with rhabdomyosarcoma, Ewings sarcoma and brain tumours.

It is an inspiring programme, read more at https://nex-t-gen.com It is divided into a number of work packages:

* discovery phase of target identification & evaluation,
* discovering more about the tumour micro environment in these tumours
* engineering pioneering components to further the effectiveness of T-cell therapy
* developing pre-clinical models that emulate the tumour and it’s microenvironment
* opening three phase 1 clinical trials in the USA and UK
* data generation, capture & sharing underpin the project.

Two of these clinical trials are now OPEN and recruiting. Details in the links below. MIGHTY Great Ormond Street Hospital and Charity and UCLH - University College London Hospitals NHS Foundation Trust and SABRE Children’s National Hospital in Washington DC.

https://www.isrctn.com/ISRCTN75533638

https://clinicaltrials.gov/study/NCT07172958 -overview

Alice asked the question ‘When will they find me a new treatment?’ For me, these trials are the closest thing to a new treatment that I’ve seen since hearing the word ‘rhabdomyosarcoma’ back in 2015. This is the first step towards finding out if CAR T-cell therapy could be a safe and effective way of treating rhabdomyosarcoma.

There is still much work to be done.......... but let’s imagine a future when old, toxic chemotherapy protocols are no longer the norm and a diverse set of treatment options encompassing T-cell therapy, vaccines etc are on offer. This is why our charity exists and what motivates all our Arcs and supporters.

The EVAN Foundation Abbe’s Arc Nicole Croft

17/03/2026

18/02/2026

Look at Elsa!!!!!! Isn’t she beautiful!!!! I followed Elsa’s journey before Mollie got cancer. She lives close to us so naturally followed her on Facebook. Watching her head over to Jax for radiation, gruelling chemo, fighting to survive Ewings Sarcoma. Hard to watch. Little did I know in less than a year we would be on the same terrifying path with a very similar aggressive sarcoma. I reached out to Lesley, Elsa’s mum,
slipped in to her DMs the night Mollie was diagnosed with a “my baby has cancer”
We been friends ever since!! We have a similar sense of humour which gets us through the tricky times. I’m so proud of wee Elsa!!! She has had it so so tough yet look at her on her formal night🥹🥹 gives so much hope to so many ###x Also a timely reminder……. I followed Elsa’s journey feeling sorry for the family but never in a million years thought it would happen to us. It absolutely did. Know the symptoms of childhood cancer and live your life like it could all change in a blink of an eye x

15/02/2026

🎗️International Childhood Cancer Day🎗️

Cancer took parts of childhood.
She takes them back — one match at a time🏑💪🏼

04/02/2026

World Cancer Day

Here is our last family photo before cancer entered our lives. Two weeks later our world as we knew it fell apart. Never to be the same again.

27/01/2026

Have a watch! Little children including our Mols hoping to make a change xx

19/01/2026

Thankyou Rowena for sharing your experience xx

08/01/2026

Surviving rhabdomyosarcoma is the first huge hurdle. The lucky ones then face significant late effects from the gruelling treatment that saved their lives. Ellie advocates so well for rhabdomyosarcoma survivors x

25/12/2025

Love and hugs from Mollie. This is a really difficult time for so many ###x Thinking of our little community today and always xx

21/11/2025

We have a love hate relationship with growth hormone!!!! Mollie still really hates getting the injections, we really don’t giving her them but look at this!!!!! She is now back up to the height percentile she was before cancer treatment. She has muscles and much more energy! Growth hormone deficiency is thankfully a one of the few fixable late effects. Happy two years growing Mollie Moo!!!
21st Nov 2012 is also the day we found out tiny newborn Grace didn’t have a fully formed thyroid! Thankfully another very fixable condition! But the 21st Nov is a little bit of a mummy medically emotional memory for me🥺

16/11/2025

Parameningeal rhabdomyosarcoma sarcoma with high risk features:
skull erosion, cranial nerve involvement, located in pterygopalatine fossa

Always have hope❤️❤️