Related Support Services

It’s important to seek support from family, friends, health professionals or other services to help you, your child and your family cope with cancer.

Your child’s treatment team can assist you to access support services and we have listed a range of options below. For additional specific information about childhood cancer, contact any of the major children’s hospitals and networks in your state or territory.

Visit our Connecting with other families area for ideas on how to get involved with our neuroblastoma community.

Information about neuroblastoma (Australian)

Australian Government Children’s Cancer Website
Neuroblastoma Downloadable Fact Sheet from the Australian Government
Children’s Cancer Institute
Living with Children’s Cancer
Cancer Advisor
Centre for Genetics Education
Kids guide to cancer App from Camp Quality
John Hunter Children’s Hospital Cancer Service

Information about neuroblastoma (international)

Children's Oncology Group Family Handbook
PDQ® Pediatric Treatment Editorial Board. PDQ Neuroblastoma Treatment. Bethesda, MD: National Cancer Institute (NCI) USA.
Patient information publications from the National Cancer Institute including Children with Cancer: A Guide for Parents
St Baldrick's Foundation - what is neuroblastoma article
American Cancer Society
American Cancer Society - questions to ask your child’s cancer care team
Neuroblastoma Society (UK)
Neuroblastoma Parent Handbook - Neuroblastoma UK
Cure Search (USA)
The Advances in Neuroblastoma Research Association
The Neuroblastoma Consortium (Global)
The Children’s Neuroblastoma Cancer Foundation (USA)
Neurobla stoma a Handbook for Familie s - Association of Pediatric Oncology/Haemotolgy Nurses
Children’s Cancer and Leukemia Group (CCLG UK) - large range of downloadable and free publications
The Children’s Oncology Group (based in USA)
eBook Lucy has a Tumour - UK charity CLICK Sargent
International Society for Pediatric Oncology

Family related information from the Cancer Council

The Cancer Council Australia. Call the Cancer Council Helpline from anywhere in Australia for the cost of a local call on 13 11 20.
A Summary of Childhood Cancer Statistics in Australia (from 1983 to 2014) produced by QLD Cancer Council
Cancer Council (NSW - talking to kids about cancer)
Cancer Council (QLD - cancer in the school community)
Cancer Council (TAS - children, adolescents and young adult services)
Cancer Council (SA - counselling and mindfulness)
Cancer Council (WA - services and programs)
Cancer Council (NT - online resources)
Cancer Council (ACT - information and support)
Cancer Council (VIC - during and after childhood cancer

Information from Australian Hospitals

Peter Mac Cancer Centre (VIC) Paediatric Oncology
The Royal Children’s Hospital Melbourne (Chronic illness and school)
The Royal Children’s Hospital Melbourne (What do I tell my friends?)
Paediatric Integrated Cancer Service (Coming off treatment parent handbook)
Kids Cancer Service John Hunter Hospital
Cancer Centre for Children, Children’s Hospital Westmead information includes:

Women’s and Children’s Hospital Adelaide:

Childhood cancer Information for you and your family resource area
Neuroblastoma Fact Sheet

Podcast - Dr Geoff - Dr Geoff from Westmead hospitals podcasts. He explains treatment well and particularly each drug.

Financial and emotional support

Palliative care and bereavement support

NSW Paediatric Palliative Care Programme
Australian Paediatric Palliative Care
Feel The Magic Foundation (childhood bereavement support)
Sydney Children’s Hospital Bear Cottage - family support services:

Books

Redkite Bookclub - Books about cancer for children, parents and medical professionals.
Cancer Advisor - Reliable information for families of children with cancer, and young people under 25 with a diagnosis.
Book - Childhood Cancer: A Parent’s Guide to Solid Tumour Cancers
Book - My Cancer by Angus Olsen https://wanderingbookseller.com.au/p/cancer-my-cancer

If you have had a good experience with a support service and think that other families would benefit, please email us at [email protected].

Latest

Isla's Story #32KM

This fun loving and active teenager began her neuroblastoma journey before she'd even celebrated her first birthday.
Ethan's Story #19KM

Brave, generous, cheeky and handsome Ethan, so loved and forever in the hearts of his family and friends.
Run2Cure Domain Cancelled

It’s been a challenging year so far for all of us and I was hoping we would be able to go ahead with Run2Cure 2020 in The Domain, Sydney on 6 September for the sixth time but sadly we have no choice but to cancel the event and move it to May 2021.
Run2Cure Local 2020

Welcome to our NEW Run2Cure Local; our first ever virtual event. Take part in our #funrun4everyone - wherever you are in the world - anytime between 5am on Saturday 5 September and 6pm Sunday 6 September. Tickets only $15 for adults and $7 for children !

Coronavirus help guide

With fears regarding Coronavirus riding high, we take a look at what we can do to help our neuroblastoma families during this crisis and where to go for the latest information and advice.

Run2Cure Domain 2020: postponed to 2021

We need to ensure we play our part within the community and put safety first so Run2Cure Domain 2020 will now take place on 30th May 2021. In the meantime, please join us for Run2Cure Local! In our first virtual event do your own run or walk (1k, 3k, 5k or 10k) over the weekend of the 5th and 6th of September and support a cure to the children’s cancer neuroblastoma.
Accessibility

Neuroblastoma Australia is committed to providing a website that is accessible to the widest possible audience, regardless of technology or ability. Our website endeavours to conform to level Double-A of the World Wide Web Consortium W3C Web Content Accessibility Guidelines 2.0.
Kahlilla's Story #14km

Little Lilla's light continues to shine. Always and forever.
Detection, diagnosis & staging

Most symptoms of neuroblastoma are caused by the growth of the cancer into nearby tissues or organs, or its spread to distant parts of the body such as bones or bone marrow.
What is neuroblastoma?

Neuroblastomas are cancers that start in early nerve cells (called neuroblasts) of the sympathetic nervous system. This means that tumours can be found anywhere along this system; most commonly (about 50%) start in the adrenal glands (above the kidney), or near the spine, chest, neck or pelvis.
Childhood Cancer Awareness Month

September is Childhood Cancer Awareness Month. Share our hope for a cure for ALL types of neuroblastoma during September. More children under five die from neuroblastoma than from any other childhood cancer.
Two research grants awarded

Today we announced funding grants to two ground breaking research projects which we hope will take us a step close to finding a cure for the rare and deadly children’s cancer neuroblastoma.
Give a gift to a child with cancer

Brighten a child's day by donating one of our three amazing new activity packs! If you would like your gift delivered to a specific neuroblastoma family, please type their details in the comments area of your order. We'll take care of the postage and handling AND all of our gift donations are tax deductible.
Michael's Story #24 km and #25 km

Just when there was no hope left Michael was offered the last spot in a drug trial for 25 children. Sadly Michael was the only survivor. Tracey and Natalie will run KM 24 for those 24 children and their families who continue to grieve for them every day. KM 25 will be for Michael.
Free family activities

With so many of our families and friends at home or in hospital, we've put together some of our best picks for free family fun. We hope you enjoy them! If you have anything fun you'd like to add, please email us at [email protected]