Connect with Parents with Lived Experience

Finding out that a child has neuroblastoma can dramatically impact your life and those around you. Often parents and carers feel isolated and feel in a foreign world. Parents may even feel lost in an overwhelming situation that has complex emotional and practical demands.  

To help families navigate the journey of cancer diagnosis, and life in and outside hospital, we’ve created a network of experienced parent and carer volunteers who can provide practical tips and insights based on their personal experience.    

Please be mindful that our volunteer contacts are not qualified to provide any medical advice or opinions and this should always be sought through your treating oncologist. 

How it Works 

If you would like to connect with someone in your area, please email us at info@nb.org.au.

Please provide a brief overview of your current situation and if you have a specific area of concern or interest.

For example: you have a new neuroblastoma diagnosis for your child who is three years old.  The neuroblastoma is low-risk and requires a six-month treatment program consisting of five rounds of chemotherapy. Your child and your family will be required to relocate for this time to a hospital in another state that provides the appropriate care. 

In this circumstance you may be interested in connecting with a family that has also had to relocate to access treatment.  You might be looking for tips on how to manage schooling, or suggestions on what to take with you while in temporary accommodation. 

Other areas you might like to discuss could include:

• Parents’ experiences finding and accessing psychological support
• Ideas for managing work schedules
• How others have supported siblings during treatment
• Suggestions on how to communicate a new diagnosis to family members, school, or workplace
• Tips to make hospital stays manageable for the whole family

Volunteer Details and Locations

We currently have the following volunteer contacts. If there isn’t currently a parent or carer volunteer in your area, you are more than welcome to request making contact with any one of our volunteers in other areas.

NSW

Lucy

Our CEO Lucy Jones is a parent and is always happy to take questions and calls.  Find out about Lucy’s story here  

Victoria

Katherine 

Katherine is always happy to be contacted by other parents or support people and is happy to help with advice or support about hospital stays, managing as a single parent, fundraising or anything else. Katherine is also a keen advocate and has spoken on the recent senate committee to try and fund kids getting to trials.

Katherine explains, “My son had just turned 3 when he was diagnosed with stage 4 high risk neuroblastoma. We were turned away by GPs eight times in 5 weeks, all telling us he had a virus and to ‘wait it out.’ By the time he got to hospital, he had a 6cm tumour in his stomach, and had a curie score of 26 meaning that almost all of his body was riddled with cancer.

I was a single parent at the time with a 5 year old about to start school. We were plunged into the kids’ cancer world and quickly learned that information is hard to come by, planning for anything ahead of time no longer exists, and to take every day one day at a time. Waiting becomes the hardest thing in the world. Parent groups and Neuroblastoma Australia became the best support system.

Around my son’s transplant time I started looking into extra treatment options and again lent heavily on other parents’ experiences. In the end we embarked on a fundraising campaign to raise money to take him to NYC for a trial on additional immunotherapy. He may never have needed this additional treatment and quite likely would have been ok without it, but parents will understand trying anything on the table. 

He ended treatment here in October 2018 and completed the American trial in December 2019. He is now 11 years old, happy, healthy and and doing well. Side effects from treatment include hearing loss (he wears hearing aids), infertility, and motor tics (Tourette’s), all of which he handles with his signature easy-going manner.”

South Australia

1.Megan

Megan is keen to support other families and represents patients on various committees in South Australia.

“My daughter was diagnosed in January 2022 at the age of 3.5yo with Stage 4 High Risk Neuroblastoma. Her journey through frontline treatment was not without its challenges and hurdles and as a result we are acutely familiar with many different teams and services across the WCH network in Adelaide.

Today, my daughter is in remission and we are navigating the Survivorship space together taking things one day at a time.

Much of our journey was walked during the height of COVID restrictions and so I didn’t start to form connections with other families until much later when restrictions began to ease. These connections and shared lived experiences were so valuable to me as a primary carer and I hope I can now help other families navigate their own path as they support their child through treatment and beyond.”

2. Natalie 

Natalie is a passionate advocate for families affected by neuroblastoma.  You’ll probably be familiar with Nat’s rainbow coloured tutu that she wears at multiple running events throughout the year to raise awareness about neuroblastoma. Nat is also closely connected with many families and very familiar with numerous aspects of the diagnostic and treatment journey.

“I live in Adelaide and I can often be found running or jumping out of planes in my tutu and Run 2 Cure singlet to raise awareness for Neuroblastoma and for children diagnosed with this aggressive childhood cancer. 

For the last 10 years I have organised many local fundraising events to support Neuroblastoma Australia and families. I am passionate about providing local support to Neuroblastoma families in Adelaide and the local area.”

Tasmania

Jacqui

Jacqui has had extensive experience of travelling overseas to access trials.

“My now seven-year-old was diagnosed with Stage IV High Risk Neuroblastoma at 18 months. We relocated to Melbourne for treatment at the Royal Children’s Hospital.

We travelled to USA for DFMO, Omburtamab (CNS) relapse and finally the Bivalent vaccine trial.

I am happy to be contacted for any support around relocation, trials, relapse and hospital experience and anything else really. My child is now two years cancer free.”

My 10-month-old had stage IV by the time they were diagnosed in April 2021, and received treatment for 2.25 years. Their treatment ranged from outpatient, inpatient, chemotherapy only, chemo plus immunotherapy, surgery, and differentiation therapy. Our care has now been moved to the survivorship clinic so we feel lucky and grateful for all that has gone well for us. I would be honoured to help support newly diagnosed families. 

 Volunteer Parent Contact

Interested in Volunteering?

The more volunteers we have, the more likely it is we can match families with the right volunteer contact. If you are interested in volunteering as a family contact, especially in the Northern Territories, Queensland, NSW, ACT, or Western Australia, please email our team: info@nb.org.au