Claire Bailey’s daughter, Poppy, was diagnosed with stage 4 high-risk neuroblastoma in July 2020 aged four. She writes on how the relationships she’s formed with other families have provided support both during and after Poppy’s treatment.
Before Poppy’s diagnosis, she’d been gradually losing weight, becoming very pale and complaining of leg pain for a few months. After an X-ray found a large tumour in her chest, which had spread to several parts of her body, treatment began at Addenbrookes Hospital straight away.
Being on a children’s oncology ward – thrown into a whole new world that you don’t want to be in – feels very scary and lonely. I found having little chats with other parents on the ward really helpful in easing the loneliness, whether in the corridor, in the parents’ kitchen while making breakfast, or a ward WhatsApp group. These other oncology parents all understood the fears, the sadness, and the isolation from the outside world. They were also navigating new experiences, such as learning to bath your child with a Hickman line in place or trying to understand all the new medical terminology.
The parents who’d been on the ward longer offered advice, like where to buy the best NG tube tape or get the nicest coffee nearby, or how to balance spending time with your other children at home. However, I didn’t meet any other families with the same diagnosis as Poppy for a few months. I relied on social media to discover other children with neuroblastoma, and even then, they were all at different treatment stages.
After 13 cycles of chemotherapy, we were told Poppy’s disease was refractory (resistant to chemotherapy). Her consultant got her a place on the MiNivAn clinical trial which involved two rounds of internal radiation at University College Hospital in London, then six rounds of two immunotherapy drugs at Southampton. Discovering Poppy was refractory and would have to travel to other hospitals was a particularly lonely time as I didn’t know anyone else in the same boat. After much searching on Facebook, I found another mum whose daughter also had refractory disease and had recently been on the trial. I phoned her and we ended up speaking for over an hour about MiNivAn. Hearing about it from a non-medical perspective eased my anxiety immensely.
The trial was successful for Poppy, so we returned to Addenbrookes where she underwent surgery to remove the tumour in her chest. We then travelled to Great Ormond Street Hospital for high-dose chemotherapy with stem cell transplant before heading back to Addenbrookes, for three weeks of radiotherapy to Poppy’s chest, and five rounds of immunotherapy. She was declared no evidence of disease in October 2022 and finished treatment.
Being suddenly thrown back into the ‘real’ world felt a lonely time. But, having enrolled on a video course with Solving Kids Cancer called ‘Life after Cancer’, I met other parents all at similar stages. It was nice to have my feelings validated by people who really understood my ongoing fears.
We were lucky to have an amazing consultant to talk very openly with throughout treatment and ask any questions. However, it really helped to have non-medical conversations and to share experiences with other parents, so I’d advise newly diagnosed families to seek support from those going through similar experiences. I found this invaluable and still do nearly two years after treatment finished.
Poppy, who’s now nine, attends school full time and has many hobbies including swimming, indoor climbing, Cub scouts, drama and playing the violin. She loves Harry Potter and animals and wants to be a scientist when she’s older. She’s also still friends with a little girl she met at Addenbrookes, whose mum I still speak to, and we’ve all met up at the seaside. During her treatment, I met many other parents through Poppy – she’s such an energetic and confident girl, she spoke to everyone around her, breaking the ice for me!
From Contact magazine issue 104 | Autumn 2024
