We are excited that Xavier is NED again and that we are one step closer to going to MSK in New York to do everything we can to keep the neuroblastoma away for good.
Thank you to everyone who has supported Xavier so far!
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.
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.
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 in September 2022. However, scans in March 2023 showed 2 new growths so Xavier is now undergoing further treatment for relapsed neuroblastoma.
The long term survival rate is less than 20% with the curative treatments available in Australia.
Xavier’s only chance of long term survival is a clinical trial overseas that will cost you $500,000 and you need to start treatment 60 days once your child reaches No evidence of disease and finishes rescue treatment.
You can follow his story and support the family through their Facebook page, Shave for Xave