Poppy's Story

Here is Poppy’s journey 💕

In May 2020 Poppy started complaining of occasional leg pain. Over the next month or so she gradually lost weight, her skin went very pale and she was more tired than usual.

Once a very confident and bubbly girl, she also became very withdrawn and clingy. We had just had a baby and the country was in lockdown, so at first we put her clingyness down to all the changes she was experiencing, having a new brother and not seeing her friends at school.

The leg pain got so bad that she was struggling to walk so I contacted our GP over the telephone. He suspected low iron and a blood test indeed found she had extremely low iron. She spent the day at our local hospital where she underwent various tests and scans.

Eventually an x-ray revealed a large tumour in her chest pushing against her heart and one of her lungs. She was blue-lighted straight to Addenbrookes hospital in Cambridge and a Hickman line was inserted straight away. After more scans, we were told that Poppy had been diagnosed with Stage 4 high-risk Neuroblastoma and that her tumour had spread all over her body. She had a 50% chance of survival. She was 4 years old.

Her baby brother was only 3 months old. She was given 13 rounds of chemotherapy but this only showed a partial response, so she was classed as having "refractory disease" (ie. stubborn). The doctors were unsure what to do next, but she was lucky to gain a place on the Minivan clinical trial. This involved firstly spending 4 weeks at University College hospital London having MIBG therapy (internal radiation) and being on her own in an isolation room. Next it involved spending 6 months having 2 types of immunotherapy drugs at Southampton hospital.

At the end of the trial we were given the fantastic news that Poppy's disease had significantly reduced and we could return to the standard treatment protocol. Back at Addenbrookes Poppy underwent 6 hour surgery to remove the tumour in her chest. We then had to travel to Great Ormond Street hospital where she was given high-dose chemotherapy with stem-cell transplant. This made her quite poorly and her lovely hair fell out yet again, but she continued smiling and being her bubbly, cheeky self. Next it was back to Addenbrookes for 3 weeks of radiotherapy and another 6 months of immunotherapy. In October 2022 her final scans showed no evidence of active disease 🎉 She still has 1 spot on her hip but a PET scan has showed it to be dead disease.

20 months later Poppy is doing really well and leads a pretty normal life again. She enjoys rock climbing, swimming, drama, music and spending time outdoors with the Cubs. She showed such resilience and bravery throughout her journey, always playing with the other children at hospital and keeping the nurses on their toes! Unfortunately Neuroblastoma has a very high chance of relapse, so the doctors won't use the term "remission" until 5 years after treatment finishes. Despite still living in fear of her cancer coming back.

This break will give us a great opportunity to spend time together properly and hopefully relax a bit, thank you everyone at Ben Saunders Foundatiob 💕