Xavier was diagnosed with stage 4 high risk Neuroblastoma at the end of March 2021, when he was just 3.5 years old. Xavier’s mum, Danielle, tells us his story. 

Xavier’s symptoms appeared abruptly one night. He came into our room with severe abdominal pain, and projectile vomited all over our bed. We initially thought he had appendicitis so immediately called an ambulance. 

By the time we reached the hospital Xavier seemed fine and happy. However, a few days later he had more pain, this time in his back. We went back to numerous doctors who undertook blood and urine tests. We were told everything was fine and that he just had a virus.  

The pain then moved to Xavier’s chest; he couldn’t even climb up on my bed. I called another ambulance, and we ended up at Women’s and Children’s Hospital in Adelaide. 

Although the hospital’s doctor felt there was nothing wrong, she decided to send him for an x-ray - just to double check he hadn’t swallowed anything. Later that night we got a phone call saying a consultant had reviewed Xavier’s x-ray and they saw a slight shadow. We needed to return the next day to have an ultrasound. Danielle, Xavier's mum

That weekend was when our life changed forever, and we heard the word ‘neuroblastoma’. 

   

Xavier had a solid tumour on his right adrenal gland.  From this point we didn’t leave the hospital.  Xavier went through 18 months of intense treatment which included chemotherapy, surgery, high dose chemo with stem cell treatment, radiotherapy, and immunotherapy. 

Even though Xavier got really sick through treatment, we tried to keep his life as ‘normal’ as possible.  Xavier loves swimming, but he couldn’t swim because he had his central line. As soon as he had finished his 2nd high dose of chemo we got his central venous catheter removed and a port put in for the remainder of treatment.  This was one of the BEST decisions we made and fought for! December 2021 he was swimming again.  

With the approval of our oncologist and pharmacist, I supported Xavier’s body through treatment by seeing an integrative GP, and naturopath. I feel so blessed that our oncologist let me do this. The deal was we had to have an open relationship and I had to be honest, which I was. 

The 18 months of intense treatment meant massive sacrifices for our family, work and business.  Xavier has an older sister who is 7, she had to be so resilient. At the time of Xavier’s diagnosis, she was starting her first year of school. To this day I still carry so much guilt for not being there for her.  Danielle, Xavier's mum

My husband and I run a plumbing business which is our sole income. I ran our business from the hospital, catching vomit, cleaning up poop, or just snuggling Xavier while I did pay-runs, booking customers, social media and general admin, - the list goes on! This was super challenging but I’m glad I had something to keep me occupied with my time in hospital.  

Xavier received the news he was NED (no evidence of disease) after finishing treatment. However, scans in March 2023  showed a new growth so Xavier is now undergoing further treatment for relapsed neuroblastoma. You can follow his story and support the family here https://www.facebook.com/shaveforxave/

I’m so blessed and thankful that I have a healthy five-year-old who is starting school this year and living a normal life, despite having hearing loss from treatment. However, I often wonder if I didn’t push how long would’ve it taken for diagnosis? Would have it been worse? Spread further? I’m glad I never stopped pushing! Danielle, Xavier's mum 

We are now trying to go back to our normal life before we knew what childhood cancer was. And creating amazing memories as a family of five - that’s right, through the chaos and storm we introduced a new little baby boy, Benji.  

  

Help Children Like Xavier 

Neuroblastoma Australia is working with researchers to develop more effective and less toxic treatments for all children diagnosed with neuroblastoma. We need to ensure every child gets the opportunity to grow up and lead a long and healthy life. Your help matters. Your donation to Neuroblastoma Australia ensures that we can continue to help fund the research needed to develop better and safer treatments, and ultimately find a cure.

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