Family Support Connecting with others Volunteer Parent Contacts 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 [email protected]. 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 Contact Locations We currently have volunteer contacts in the following locations: New South Wales Victoria Tasmania South Australia Queensland 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. Jenny, 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, ACT, or Western Australia, please email our team: [email protected] Manage Cookie Preferences