Danielle’s story: Conquering neuroblastoma

22 Feb 2024

One night, three-year-old Xavier ran into his parents’ room with severe tummy pains. Initially thought to be appendicitis and then a virus, it was discovered that Xavier had a tumour on his right adrenal gland. Within a week he started treatment for stage 4, high risk neuroblastoma, a rare cancer that develops in the nerve tissue.  


“That weekend our lives changed forever. We didn’t have time to think or process, we just had to go with it. From that point we didn’t leave the hospital,” remembers Xavier’s mum, Danielle. 


Xavier went through 18 months of intense treatment including chemotherapy, surgery, high dose chemo with stem cell treatment, radiotherapy, and immunotherapy, before receiving the news that he was NED (no evidence of disease). 


Six months later, they received the news that Xavier had relapsed, and would have to undergo further treatment.    

Now six, Xavier’s only chance of long-term survival is a clinical trial in New York. But at a cost of around $500,000, his family is having to crowdfund through RCA’s Patient Treatment Fund to help afford it.  

“I strongly believe that we as parents shouldn’t have to fundraise to save our children’s lives. It’s so wrong. We are having to raise half a million dollars and I’m scared that’s still not going to be enough.” 

Danielle got in touch with RCA after hearing about it from other mums whose children are living with rare cancer.  


“I was hesitant at first, I didn’t know if they could really help. But I’m so glad I made that call. I wish I knew to reach out as soon as Xavier was diagnosed; it would have taken so much pressure off to get the ball rolling sooner.” 

“Other mothers in the same position have reached out to me and asked me about RCA, and I can’t speak highly enough about them. The support they give, the connections they have, even just having someone to talk to when you’re really frustrated they’ll help with anything. They’ve made this whole process a lot easier.” 

The Kosi Challenge is RCA’s major fundraising event, held in March each year since 2013. All funds raised through the Kosi Challenge go towards the important work of RCA’s Patient Support Team. 

From helping patients to access specialists and treatments, through to delivering support groups, connecting people with services and providing financial assistance particularly in times of crisis, our Patient Support team are at the heart of what we do. 


You can show your support with a donation or register to attend Kosi in person or virtually.