Keep Olivia Smiling

30/12/2025

This year Olivia has achieved SO much and all whilst on active treatment for a brain tumour.

Whilst we would take this treatment (targeted inhibitors) ANY day over chemotherapy it still brings side effects, some obvious but some hidden.

Every single day, twice a day, Olivia has to fast to take her medicine, which she hates.

In 2025, Olivia has voiced a radio advert for charity, acted in an episode of Eastenders, been interviewed by This Morning and excelled at school. She is currently taking her Grade 4 singing exam and we could not be more proud.

I love how every single day of her life people underestimate her and every time she smashes their expectations out of the water proving that she can do absolutely anything anyone else can do!

In a few days we have both her diagnosis anniversary (worst day of the year and in mouldy January!) and an MRI brain scan so it's going to be a tough week ahead but we continue to stay positive for good results and pray for a stable 2026.

28/12/2025

Throwback to having a Royal-Tea exactly 2 years ago in Windsor Castle!!

Just the craziest and most surreal memory!!

🏰 ☕️

16/12/2025

Thank you for thinking of us and sending us some amazing 🎁

It means so much more then you ever know that someone is out there thinking of us always!

Olivia had a hospital stay this week due to having the dreaded but is thankfully doing super well battling it!

Anyone that understands world will know that bugs can be life threatening to those with reduced immunity. Praying her temperature doesn't spike again and we can be out of the woods for xmas 🙏 luckily Olivia's neutrophils are pretty high this week 🙏

13/12/2025

Unfortunately, the 'big' eye appointment was just as frustrating as ever! I was alone at this appointment and I wanted to cry the entire way through so I wish I hadn't gone there alone in hindsight because I didn't want Olivia to know how devastated I was.

'Improvements cannot be quantifed' but I know my girl best and I know we have developments. The most I could get when really pushing them was to say 'small but subtle improvement'.

There was some other good news though. The treatment Olivia is on can damage her retina (on top of everything else!) but so far, no signs of this so I am taking this as a positive appointment nonetheless.

08/12/2025

Olivia's amazing consultant!

We are thrilled to announce The Royal Marsden, as part of the South London Paediatric Neuro-Oncology Network, has been designated a Tessa Jowell Centre of Excellence for Children, highlighting the strength of its services for children with a brain tumour.

The South London Paediatric Neuro-Oncology Network is one of four UK paediatric neuro-oncology centres to be awarded the designation by the Tessa Jowell Brain Cancer Mission (TJBCM).

For the past 18 months the centre’s neuro-oncology team has implemented innovative new solutions, showing an exceptional commitment to service development, bringing together a wide number of specialties to deliver impactful changes.

Dr Fernando Carceller, Consultant in Paediatric and Adolescent Neuro-Oncology at The Royal Marsden, said:
“Finding cures and saving lives demands the highest standards of excellence. At The Royal Marsden, we know that achieving and sustaining this excellence requires constant motivation, meticulous planning and a relentless drive to find better, kinder ways of doing things. For patients and their families, a diagnosis of a brain or spinal tumour is a devastating life event, and we understand the immense challenges they face. The management of these tumours is highly complex, but through our specialised network of expert neuro-oncology centres, our team delivers the most compassionate, advanced and collaborative care for children, adolescents and young adults at every stage.”

Read more: https://brnw.ch/21wY4T0

08/12/2025

I have been holding off writing this post because I was worried it was temporary (still am), however....Olivia has had some improvements to her vision over the last few months.

She is able to see light, colour, shadow, shape and contrast and is getting around better then ever before. She has even said she can see our facial features, although they must be very blurry.

Last week, we were in London with her and she said she could see the yellow line alongside the train platform edge. This is HUGE.

We have the most important eye appointment we have ever had on Thursday to hopefully confirm these changes (although these eye appointments are incredibly frustrating!)

Olivia's brain tumour is unpredictable and we have no way of knowing if this is a permanent change or if it is as a result of the treatment Olivia has been on for a year and we are fully aware that if the tumour grows again it could reverse the changes we are experiencing.

For now, we take every positive moment as it comes and try to live in the moment. It is actually quite confusing for Olivia and quite overwhelming but she has also voiced that she is excited by some things she has seen too.🥰

To be 100% clear, Olivia is still registered blind, and for educational purposes it makes no difference (still a reader and a white cane user) however blindness is a spectrum and we are trying to embrace the changes whilst supporting her!

07/12/2025

Thank you for the amazing hampers!!! We are making the girls wait for their treats (we may have peeked)!

11/11/2025

Alan Carr. 💛
As many of you may know, this past week, Alan Carr won Celebrity Traitors. Winning an astounding £87,500 for the wonderful Neuroblastoma UK. For families like mine, who have been devastated by the cruel reality of neuroblastoma, words can’t begin to express what this means.

Neuroblastoma UK fund so much vital research, the money could quite literally save lives.

So, Alan. From me, my whole family and everyone around the country affected by Neuroblastoma. Thank you.

21/10/2025

Exceptional stressful few weeks over here! Olivia's dad is away for work and I also work full time in a super fast paced scale up, plus it is half term. 🥴🥴🥴🥴

Olivia is the most amazing, wonderful child but it doesn't take away the fact that having a child with additional needs is intense and unpredictable.

Last week, Olivia had to go to hospital for check up as she had quite a severe headache for a few days. Luckily, it was just viral but the fear and anxiety never ever leaves us. I really thought it was brain tumour related even though rationally this made little sense because her tumour is stable at the moment on her current treatment.

Olivia's next MRI brain scan is in January and we have now formally moved from 3 monthly scans to 6 monthly. This is meant to be a good milestone but the anxiety around longer stretches of time is sometimes unbearable. We have zero idea what is going on inside her brain during these months and we can only assess her with part intuition and part watching out for physical changes.

Olivia's emotions are absolutely all over the place and we will never ever know what is just her, what is tumour related, vision, hormones or perhaps stress related to everything she has been through since diagnosis at just 17 months old. Olivia is under a psychology team to help us manage this but it feels like such an uphill battle some days. Medical term is 'emotional lability' in brain tumours.

Everyone that meets Olivia will always tell us how smiley and happy she is and we really strive to give her the best life but she has really hard days too.

I don't really have a point to this post except maybe to send solidarity to other parents out there who may be reading and maybe so I don't feel alone in my worries!

It is bloody hard being a parent carer.

27/09/2025

Olivia is doing absolutely amazing but it feels important to say that we still have a lot of challenges.

At Olivia's last appointment we were informed that the drugs she is on currently (which have returned a quality of life to us) are not promised to be continued into the future. It is a complex situation between drug companies and the NHS that I won't try to explain here but I have become accustomed to the fact that Olivia is having shrinkage and stability on this treatment after years and years of sickness and horrendous side effects on I just don't even want to think about the fact that she may not always have access to it.

I do not know what the future holds but I do know we still have a huge battle on our hands. The only way we have got through the last 8 years is by taking one step and hurdle at a time and not thinking too far ahead but some days it weighs heavier then others.

For anyone reading who is in this world - we are in the UK and the drugs are . Olivia's tumour is an optic nerve glioma BRAF mutation.

06/09/2025

Childhood cancer awareness month - every year I find myself mentally drained after September, it is a hard month but such an important one.

If even just one person spots a sign or symptom that can lead to an earlier diagnosis for a child we will have made a difference!

I would be so grateful if you could share any of our posts relating to this ###x

04/09/2025

This September is Childhood Awareness Month and our little girl Olivia has been helping shine a light on the cause!

Her beloved teddy, Corry, inspired the
AlwaysByYourSide 
campaign 💛 

Please support it if you can 🎗️
https://youtu.be/tYFrA_KBS28