Violet’s Story - Childhood Cancer Awareness Month
At age 9 Violet told her mum that she had a monster in her tummy, prompting her mum Laura to seek medical support. After an ultrasound it was discovered Violet had neuroblastoma. Now having reached NEAD (no evidence of active disease) Laura reflects on the last year and the fears she still carries for her daughter’s health.
Last summer, Violet (aged 9), kept saying she had a monster in her tummy.
Violet had occasional tummy aches since she was 5 years old. All her life her poo’s were soft, and she had night sweats. I had taken her to the GP countless times and on some occasions saw Paediatricians. I was repeatedly reassured that all was normal and that Violet’s tummy aches were simply anxiety. I always had a nagging feeling that something was wrong, but told myself that I was just being an overly anxious mother.
But last summer Violet was having nightmares about the “monster” in her tummy. So, in October I took her to the GP again. After being reassured that she was fine, I asked for a second opinion - thankfully a senior GP sent her for an ultrasound to show her that there was no monster…
On 16th October, the routine ultrasound found a 15x10x12 cm tumour in her abdomen. It was so big that you couldn’t see or feel it from the outside. The radiologist said she suspected it was a neuroblastoma, which is an aggressive childhood cancer. I can remember the room spinning and some hospital staff rushing in to comfort me.
“I was in complete shock and disbelief. There is no childhood cancer in our families – so how could this be true?”
Violet was admitted to hospital that same day. As a parent no words can truly express the horror and the terror. I will always remember watching Violet’s small body trying to lie still in the giant MRI machine, wearing oversized headphones to block out its loud banging sounds, clutching her cuddly rabbit, with tears rolling down her cheeks.
“Facing countless terrifying medical tests, procedures, and surgeries, she has been braver than most adults I know.”
A biopsy in November confirmed that Violet’s tumour was a MYCN non-amplified, poorly differentiated adrenal neuroblastoma. 70% of neuroblastoma cases have spread from the primary tumour at the time of diagnosis. Thankfully, Violet’s hadn’t.
“Violet is a unique case. She didn’t fit neatly into any category.”
Cancer staging is complicated for neuroblastoma because various factors fall into different categories.Genetic testing on Violet’s tumour and her DNA has also shown some additional mutations that further complicate the picture. Higher risk cases require a high-intensity treatment protocol; 18 months of intensive chemotherapy, radiotherapy, and immunotherapy. The side-effects from this are life-long and can include hearing loss, kidney failure, heart damage, cognitive problems and mobility issues.
Violet and her mum Laura
Her Oncology team consulted with the UK’s National Neuroblastoma Panel of experts throughout to make treatment decisions. The tumour was considered too big to safely remove, so Violet had a Hickman line fitted into her chest and started chemotherapy before Christmas.You can’t get a Hickman line wet, so washing has been a challenge. Chemotherapy made Violet very unwell. Her hair fell out, she lost weight, and she couldn’t go to school or see her friends. Many of us (including family and friends) shaved our heads to support Violet, but she still found her hair loss upsetting. We bought a wheelchair because her legs would cramp, making walking difficult. Even catching the common cold has led to hospital admissions and blood transfusions due to her compromised immune system.
Chemotherapy didn’t shrink the tumour, so it had to be removed in high-risk surgery. Thankfully, this was successful, and the surgeons believe they removed it all. Further tumour pathology results show mostly differentiated cells (now lower risk), so the National Neuroblastoma Panel recommended that we stop treatment.
The impact of childhood cancer on families is enormous. The parent who stays with the child receiving treatment is unable to work. Families struggle with the practicalities and costs of household bills, sibling childcare, transport, parking, food, and accommodation. We are lucky to have supportive family and friends, but some families do not. We also mustn’t forget the emotional impact on siblings.
“Not understanding the gravity of the situation, Violet’s brother has resented how much time I’ve spent with her in hospital, and felt very forgotten about.”
Violet’s end of treatment scans show NEAD. We know how lucky we are. Many children with neuroblastoma never reach NEAD. Violet’s body is slowly recovering - she no longer has night sweats and her poos are normal! We are thankful that she has been spared radiotherapy and immunotherapy. However, the risk of neuroblastoma relapse is highest in the first 18 months post-treatment but can happen years later.
“So, whilst everyone around us celebrates NEAD, we are going through an emotional collapse after living for months in a state of terror and exhaustion. Learning to live with the fear of relapse is going to be hard.”
Violet, who just turned 10, has shown the greatest courage and resiliency of anyone I’ve ever known.
“She is and always will be my hero and my inspiration. I am proud to be her Mum.”
To everyone reading I ask to please consider donating to a children’s cancer charity like Neuroblastoma UK. With more funding into research there’s hope of a future where no child dies from neuroblastoma and diagnosis and treatment of the disease can be improved.
Thank you to Laura for sharing her daughter Violet’s story.
Childhood Cancer Awareness Month
Every week in the UK, two families receive the devastating news that their child has neuroblastoma. This rare and often aggressive cancer not only claims young lives but also subjects children to gruelling treatments that can affect them well into adulthood.
We are fighting for #AFutureTheyDeserve. To turn this belief into reality, we are dedicated to funding ground-breaking research that can lead to more effective treatments. Our mission is clear: we must improve treatment options and ultimately find a cure. Together, we can give these brave children the future they deserve. Join us in this critical fight this September by making a donation today.
