Please help to give Freya a chance of surviving relapse

Freya’s story to date…

In December 2022 our whole world was turned upside down and our lives changed forever when we received the devastating news that our beautiful 5-year-old daughter, Freya had been diagnosed with Stage 4/ High Risk Neuroblastoma, a very aggressive and rare childhood cancer with an extremely poor survival rate.

Freya’s primary tumour began in her abdomen around the adrenal gland but due to being picked up at such a late stage (as many of the signs and symptoms can be put down to other more common childhood ailments) it had also spread to her pelvis, collarbone and bone marrow.

This marked the start of 15 gruelling months of intensive treatment for Freya. First, Freya had a small operation to have her central line (aka wigglies) fitted which was then followed by x8 rounds of induction chemotherapy (which resulted in Freya losing her lovely long blonde hair ☹), x1 round of holding chemotherapy (due to delays with surgery), major resection surgery, autologous stem cell transplant, high dose chemotherapy (at this stage Freya also had to overcome severe veno-occlusive disease (VOD), a potentially life threatening complication from high dose chemo), x3 weeks of daily radiotherapy and then x6 cycles/ months of immunotherapy. After which point, Freya didn’t even get the satisfaction of ‘ringing the bell’ because sadly we found out following end of treatment scans that she had relapsed, in a new area within her abdomen, near to the pancreas – not the news we hoped for or expected.

Since finding out about Freya’s relapse I’ve been thinking long and hard about whether I should set up a ‘Go Fund Me’ page for Freya. I would like to believe that the next course of treatment on offer to Freya (BIT chemotherapy) will be successful however I am more than aware that this may not be the case as relapse is notoriously difficult to treat and that the 5-year survival rate drops from 50% down to 5% for relapsed disease.

So, if the BIT chemo doesn’t work for Freya, we shall need to look at alternative treatment options (without delay), which could include clinical trials in the UK, if she is eligible, but may also include treatment options that are not currently funded by the NHS in the UK – for relapse, or specifically for Neuroblastoma. Those options could include an immunotherapy plus chemotherapy combination (already used with success as front line treatment in the US), or possibly CAR T-cell therapy in Rome – costs of which will amount to more than £340,000 - an astronomical sum to try and raise! And so, here I am with my begging bowl firmly out!

My hope is that if Freya’s story can be shared far and wide, there is a possibility that we could potentially raise the amount of money which may be needed and which could ultimately save our daughters life. And, if for any reason the money isn’t needed for Freya then the funds would be used to either help another child in need of treatment or donated to Neuroblastoma UK to assist in funding research projects to develop new, more effective and kinder treatments for children with Neuroblastoma along with other charities that have helped to put a smile on Freya’s face along the way, such as Young Lives V Cancer, Me & Dee and Solving Kids Cancer to name just a few.

A little bit about Freya…

Freya is just the most amazing little girl you could ever wish to meet! She is so strong and brave, with an extremely cheeky sense of humour! She has taken everything that’s been thrown at her in her stride since her original diagnosis and I couldn’t be prouder of her. She’s an absolute joy to be around and such a caring little soul. She always makes sure that those around her are ok and will always be there to you give you a cuddle if you’re not!

I should also mention that Freya is an identical twin, and her sister Alice has also shown tremendous strength and courage and has been a real support to Freya over the last 17 months. They are so close and get on famously (most of the time!), it breaks my heart to think how Alice would cope without Freya – I hope we never have to find out.

Please, please, if you can spare anything at all, no matter how small it is, it could make all the difference and if you could also please help to share Freya’s story with friends/ neighbours/ colleagues/ companies you work for or any other organisations you think might want to help it would be so very much appreciated.

Thank you from the bottom of our hearts, Debbie, Shaun, Alice and Freya xxxx