Gracie's Neuroblastoma Story

A fun, wild child

Gracie was a fun, wild child, full of energy and joy. But on 1 March 2023, our lives changed forever. It started when she couldn’t go to the toilet. Initially, we thought she had a simple stomach bug. Over the next few weeks, her condition worsened. When we took her to our local hospital, they told us her infection markers were high, and that she had a water infection. The next day, with a fever of 40°C, red cheeks, and lethargy, I demanded a scan despite their initial diagnosis of constipation. Finally, an X-ray and ultrasound revealed an 8cm tumour in her adrenal gland.

A devastating diagnosis

We were transferred to the Children’s Hospital near us, where Gracie underwent numerous scans and had a central line fitted. Over the next two weeks, she was put under general anaesthesia multiple times, which she had never had before. We then received the devastating news that Gracie had high-risk stage 4 neuroblastoma with MYCN amplification. Her tumour had grown to 15x10cm, and the cancer had spread to her bones. Despite this, Gracie was incredibly brave and started frontline chemotherapy almost immediately. She remained happy and smiling throughout her treatment.

Strength and positivity

After four cycles of chemotherapy, the cancer in Gracie’s bones was gone, and her tumour was shrinking. Following her initial eight cycles of chemotherapy, she underwent a nine-hour surgery where 95% of her tumour was removed. Remarkably, Gracie was walking within 48 hours after surgery! She was so strong and we tried our best to keep it so positive for her.

Continued treatment 

Gracie was then selected for a trial and began two double stem cell transplants in August 2023. She faced severe illness, including sepsis, but recovered quickly and was home in 24 days. This was so amazing. We enjoyed a lovely holiday and lots of fun times in the garden. However, on 15 September, she spiked a temperature, which recurred every week for three weeks. I knew in my heart that something was wrong, and I begged for scans. All my requests for scans were declined as we were told Gracie was still doing so well.

Surrounded by love

However, on 29 September, we rushed Gracie to the hospital with a 41°C temperature. After a few days, they finally scanned her, and we were given the devastating news that Gracie had relapsed severely. So severely that her liver had tripled in size. Myself and Stephen, Gracie’s father, had to make a decision that no parent should ever have to make. We decided to bring her home for her final days surrounded by love, her dogs and Peppa Pig. Gracie passed away on 19 October 2023.

Forever in our hearts

Gracie will always be remembered for being a cheeky, beautiful toddler. Her bravery, strength, and infectious smile left a lasting impact on everyone who knew her. We are immensely proud of her and will always say her name with pride. We will continue to fundraise and spread awareness in Gracie’s name, and celebrate how amazing and brave she was, and the impact her life has had on others.

To continue following our family’s story then please follow this link: The Gracie Tudor Foundation

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