There is a lot of information spinning around the world at the moment regarding the Coronavirus (COVID-19).

Although our charity's primary focus is funding research (ultimately to find a cure for neuroblastoma), we were founded by families affected by childhood cancer and as such, we know that our community faces particular challenges right now. We also know that people generally want to help but worry that their help may not be what people need or could even cause problems, particularly if a child is immuno-suppressed.

So, we have provided this guide with the intention of helping our communities.

Below you and your supporters can find:

It is not exhaustive and if you have a great idea, resource or support service please just email [email protected] so we can add it to this guide. 

Thank you,

The Neuroblastoma Team

Information regarding the Coronavirus

Download the Kids Cancer Centre COVID-19 guidance for children and young people with cancer undergoing treatment here. This advice is current as of Tuesday 17 March 2020. However with the evolving coronavirus (COVID-19) situation, advice may change. Please visit the NSW Health website and the Australian Government Department of Health website for regular updates. Also, you can access the relevant Australian & New Zealand Childrens Haematology/Oncology Group page here.

The Australian Government Coronavirus Health Alert page has up to date information, medical advice, symptoms and what you can do to protect yourself and others from the virus. The Coronavirus Health Information Line is open 24 hours a day and can be contacted regarding information on the Coronavirus on 1800 020 808.

Australians can now access bulk-billed telehealth consultations with their doctors and many other health professionals GP's, nurses, paediatricians and midwives can now be consulted without a face to face consultation. Essentially it means you should be able to dial in to speak to your doctor, and if a script is required — it'll be faxed, emailed or posted to you or your pharmacy. You can find a telehealth doctor here.

The Australian Cancer Council has released a Cancer and COVID-19 information area which contains cancer specific advice for cancer patients, carers, survivors and carers on practical ways to limit exposure to the virus. It also outlines what to do if symptoms occur and provides an information line (13 11 20) that you can call in business hours for more practical information and emotional support during this time.

The Centre for Disease Control and Prevention has released a COVID-19 Resource regarding recommended cleaning and disinfecting practices. 

Symptoms checker is available through HealthDirect.gov.au which is a government-funded service, providing quality, approved health information and advice. They also have a 24 hour health advice line: 1800 022 222

Good hygiene practices

We all must practice good hygiene to protect against infection and prevent the virus spreading. If you are ill or if you have had contact with a person who could be at an increased risk of having the Coronavirus, please avoid any contact with anyone who is receiving cancer treatment.

Seeking help

It’s incredibly challenging to care for loved ones, particularly the very young so despite the current concerns regarding Covid-19 it's important to have support from family, friends, health professionals and care services to support you, your child and your family. 

The very first port of call for any medical queries should be directed to your oncologist and your child’s treatment team which should include a social worker who can assist you to access support services like financial assistance and home care services.

We have listed a range of additional organisations and information resources in our support services area.

For additional specific information about childhood cancer, contact the major children’s hospital in your state or territory.

Latest additions - 14 August 2020

  • Quilts for special children
    • Love Quilts Australia is a small group who gift special quilts to children with challenging medical issues at no cost to families. They offer to make quilts to a child's requested theme or they have quilts ready made that can go out at short notice. If you, or your family has been impacted by neuroblastoma and a Love Quilts Australia​ quilt would provide you with some comfort, please contact Diane via: [email protected] Love Quilts Australia website can be found here. 

  • Bravery Buddies
    • Tegan, a cancer fighter for over 18 years now, has developed a range of Bravery Buddies which unlike most dolls, have no hair. The aim is for the dolls’ physical appearance to help sick kids feel like they’ve got an empathetic friend on their side; to share the experience of cancer – to be a friend to them when they need one most. If your child has been impacted by neuroblastoma, you can request a Bravery Buddy here.

  • Support for grandparents

Help from the community - cancer specific

Help from the community - general

Want to help?

According to the NSW Government these are the best ways to slow the spread of COVID-19 and help save lives:

Stay at home. Don't visit family and friends. Catch up online or call them instead. Don't go out unless it's essential. If you do have to go out, such as to buy groceries or visit your doctor, stay 1.5 metres from other people, and wash your hands as soon as you get back home.

Clean your hands regularly with soap and water for 20 seconds.

Helping families affected by neuroblastoma

If unsure how to help, it’s always worth checking with the family or a close friend and communicating via text/email or phone, rather than in person. 

You might be able to:

  • do the grocery shopping or pop to the pharmacy for them and simply drop off at their door for them.

  • do a task such as taking the dog for a walk

  • do paperwork online for them

Staying in contact is very important so please touch base with friends and families affected by text or email.

Wellbeing

It is very important to look after yourself at this time, especially when you are under a lot of stress. We have found the following articles from well-respected organisations which provide tips on managing your psychological well-being during this challenging period.

Psychological support - cancer specific

  • Having a child facing a disease as rare as neuroblastoma can be an isolating experience; particularly now with social isolation protocols in place. Please contact us on [email protected] if you would like us to connect you to another family and for more ways to be a part of our neuroblastoma community visit our connecting with others area. 

  • Redkite's support line remains open (9am-7pm AEST) and you can always contact them at [email protected]. Redkite can assist families caring for a child with cancer through information, counselling, financial assistance, support packs, books and a range of other services. Visit their website for more information and how they can help.

  • Cancer Council NSW has released information on recent changes to their services in line with health advice regarding Covid-19. They continue to offer people affected by cancer with emergency financial assistance, help travelling to cancer treatment, somewhere to stay during your cancer treatment, and emotional support. To answer any questions you might have about cancer, please call 13 11 20 Information and Support line (Monday-Friday from 9am-5pm) or [email protected].

Psychological support - general 

News articles

Gifts that saves lives

Blood products form a key component of many of our children's treatment plans. If you are a friend, family member or just a member of our community who wants to help save a life, one incredible gift that you can give is to make an appointment to donate blood. If you’re healthy and haven’t travelled overseas in the last 28 days, donors are desperately needed to help meet demand. Here are some helpful links:

More to add?

Please email us on [email protected] to add your tips to this page.