For Primrose who is battling a rare liver cancer

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For Primrose who is battling a rare liver cancer

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My 3 year old daughter Primrose is battling a rare liver cancer, hepatoblastoma. She is 1 in 1.5 million children in the UK.

Primrose became unwell late November 2025, I knew something was wrong so I took her to the GP and thankfully she sent us straight to A&E where they did tests and could feel a large lump through her tummy. I knew at that moment it was bad once I saw the doctors face. At first they said it could be that her liver was inflamed but then her blood work came back and it showed her tumour marker levels were abnormally high. My whole world fell apart. Normal tumour marker levels are 0-10 and hers were 5217. She was admitted to Brighton Alex hospital for 3 weeks as she was really poorly and couldn’t keep her temperature below 40 without medicine. I had to wait those 3 weeks only knowing that she had a lump but not if it was actually cancer or if it had spread. We were then sent to Kings college for a week for the biopsy and a central line (double hickman) to be fitted so she didn’t have to endure anymore awful cannulas. It was another 2 days before I eventually found out it was liver cancer, a 6.5cm hepatoblastoma growing rapidly. I have since found out that the original tumour would have been up to 9cm. She was 1 in 8 children that get diagnosed with this a year. We were then sent to the Royal Marsden on the 21st of December who started her chemo. Santa came to visit us the night of Xmas eve and she woke up with a sack full of presents and presents for her sister too who we had been away from for a month now. First round of chemo was completed and we managed to make it home Christmas Day evening. All of a sudden I was now a nurse with loads of medication to administer through a NG tube and keep away from sny germs which as someone with OCD, is extremely tiring.
The plan was 7 rounds of chemo which run every 13 days depending on if she got poorly inbetween and if she had a temperature of 38 or above it was straight into our local Brighton hospital. Primmy managed 5 rounds before she got poorly, this just proves her strength, bravery and resilience, even down to losing her beautiful long hair which I managed to turn into a beautiful journey of the hair fairy coming to collect in bundles in exchange for presents.
Unfortunately just after the 5th round of chemo, primmy became poorly which meant a little set back, although the chemo is great for shrinking the tumour, it was breaking down her tiny little body at the age of 3. There is also a chance she will go deaf with the chemo so we are forever singing and dancing which is her favourite thing to do, I have booked her KPop demon hunter tickets for the Brighton centre in may
She is one of the first children to trial a new drug to prevent hearing loss which the marsden funded last week. Shes had her first dose and coped so well as the side effects are extreme levels of vomiting and stress on her heart.
This is our journey so far, she has an MRI on the 31st March to figure out the surgery plan for the week after. As the tumour is over more then one fragment of her liver, it’s a high risk operation which will take up to 12 hours. We will be up at kings for 2 weeks. She is then due to have 3 more rounds of chemo and all being well she should have all her lines and tubes out in the summertime around July.
I am self employed still managing to work at times she’s not poorly and she used to go to nursery which she loved but had to stop obviously due to her being immunosuppressed but is due to start school in September once she is all better ❤️‍
I will keep updating here as we go through the next steps of her recovery journey.

All donations will go towards gifts for her and her sister, fun days out and future holidays, all things that will help brighten this dark time of our lives ❤️‍

*Update 25.4.2026

Primmy had surgery Thursday at the amazing kings college hospital and we’ve now heard that they have managed to remove ALL of what was remaining of the original 8.5cm tumour ❤️‍ she spent 2 days in PICU and HDU and is now recovering further back on Rays Of Sunshine ward at kings. We will spend around another week here and then soon go back to Brighton for another central line to be fitted under GA. She then has 3 more rounds of chemo to flush her body of any possible lingering cancer cells.

I just want to say thank you so incredibly much from the bottom of my heart for all of your donations so far, they are going to make a huge difference to our life once Primmy is in the all clear and fit to travel and do nice normal things again. My aim is to be able to take the girls on a beautiful, relaxing, fun filled holiday in the sun somewhere with swimming pools, Primmys favourite…water slides! adventurous sight seeing days out, seeing and feeding animals which she loves, precious family time without having to be in hospital like we have been since November 2025 ❤️‍

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Charley Rose
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