Although our charity's primary focus is funding research (ultimately to find a cure for neuroblastoma), we were founded by families affected by childhood canc

er 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:

• Information regarding the Coronavirus (COVID-19)

• Where neuroblastoma families can go to find help

• Tips on how supporters can assist neuroblastoma families

• Resources for taking care of your wellbeing

• How to donate blood or join the bone marrow registry

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

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

• Face masks
  • The current advice regarding masks from the NSW Government is to: 'Wear a mask if it is hard to maintain 1.5 metres of physical distance from others. Also wear a mask if you have symptoms and are seeking medical advice, or if you are in isolation in the same room as another person.'
  • Here is advice from NSW Health and a step-by-step guide from the Victoria Government regarding making your own masks.
  • Here is an article from UNSW regarding how different types of masks work. 

• #CancerKindness
  • The Australian Cancer Council is encouraging the community to join social movement, the Kindness Pandemic and lend a hand to people affected by cancer. You can download their press release with printable versions of these two checklists here.

• 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
  • Redkite has information area and also run free support groups for people whose grandchildren have cancer. 

Help from the community - cancer specific

• Super markets offering delivery service and priority services for vulnerable groups. 

  • Major retailers like Harris Farm Markets, Woolworths and Coles provide delivery services and will prioritise orders for those 'at risk' over general orders (so ensure to let them know if your family is affected by cancer). Here is the link to the Woolworths priority assistance request form.

• Pharmacies may also offer local delivery services eg Amcal www.amcal.com.au – ask for additional scripts to have one month’s supply of medicine if possible.

• Meals on wheels may be able to assist.

  • To see if you qualify for Meals on Wheels (meal and delivery ranges from $7-$10) contact your local provider here.

• Other meal providers may be an option although these do come at a premium, Hello Fresh etc

  • Check local meal providers (such as Hello Fresh, The Dinner Ladies or Home Cooked Meals) to have healthy fresh meals delivered. Many of these groups are experiencing higher than normal orders at the moment so it's important to contact your local suppliers early and identify yourself as 'high risk'.

• Tips for hospital stays from our families can be found here.

• As a parent of a chronically-ill child, it can be hard to know what to do amidst the current COVID-19 outbreak. There is an overwhelming amount of information to take in. The Sydney Children's Hospital Network has released this helpful article regarding the key things you need to know and developed a Covid-19 area of their website. They also have interesting posts on how technology is allowing ongoing healthcare for children and making the most of isolation with kids. The Sydney Children's Hospital Network offers free influenza vaccinations for its patients and you can find the details for both Randwick and Westmead here. Please note that parents with immuno compromised children need to consult oncologists regarding vaccinations.

• The Cancer Council has released a message to members of the community who are affected by cancer during the current Covid-19 crisis. See the full message here which includes information, links to support services and a video message for patients and carers and a link to their Covid-19 FAQs area. 

• Caring for a child can be an isolating experience. If you are keen to connect we host a Neuroblastoma Families Closed Facebook Group for families who have been impacted by neuroblastoma. If you would like to join this group please visit the page. If you would prefer for us to put you into contact with another family please email us at [email protected] or visit our making connections page. Redkite also host virtual coffee catch ups where you can meet up with others via video and talk about the unique challenges of having a child with cancer right now. Visit their Facebook page for dates and registration details. There are other Facebook groups which may be helpful during this pandemic. There is a group called School@Home due to Virus & School Closures which is run by home schoolers and teachers which may be helpful if you find yourself home schooling your children due to the particular risks faced by children undergoing cancer treatment. If you are home schooling for any length of time you may like to connect with the Home Education Australia Community. 

• The PeterMac Cancer Centre has developed Coronavirus (COVID-19) information area containing important information for patients and carers relating to COVID-19 including a very good FAQ page and how to reduce the risk of COVID-19 page.

Help from the community - general

• Raising Children Network in addition to developing an online guide for parents and carers regarding Coronavirus, (including protective hygiene and tips to help your and your family cope), has recently posted this article regarding Cyberbullying and helping children navigate being online safely. 

• The Australian Government launched the COVIDSafe App. You can find information regarding the purpose of the app from the Department of Health website. Visit this page for a summary of the app's purpose and to download it to your phone. 

• Karitane no longer require a GP/health professional referral; parents can now self-refer on-line here. Karitane offer a number of services to support families of toddlers and babies using digital platforms so our caring Karitane professionals can support you in your home. To know more contact Karitane Careline 1300 227 464

• Raising Children Network has developed an online guide for parents and carers regarding Coronavirus, protective hygiene and tips to help your and your family cope.

• Find out about family payments and child support if you are affected by Coronavirus from the Australian Government Services information hub.

• To help support children around the world Mindheart.co has released a story booklet to help discuss Coronavirus with children. 

• The Murdoch Children's Research Institute has just launched a new podcast series - Parenting in the age of coronavirus which is available through all streaming platforms. This podcast explores how you can best support yourself and your kids during this time. 

• The Queensland Hospital Service has released new videos and resources in their Covid-19 area for children, young people and families. Take a look at their Birdie and the Virus video and storybook which has been specifically designed to support the mental health and emotional wellbeing of babies and young children, their parents and families, during the COVID-19 pandemic.

• Australasian of Clinical Immunology and Allergy has developed an information area for people with primary and secondary immunodeficiencies, in response to the COVID-19 infectious respiratory disease pandemic. There is a section dealing specifically with Covid-19 and immunodeficiency here. 

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 

• The Kids Helpline is Australia’s free, private and confidential 24/7 phone and online counselling service for young people aged 5 to 25. They have a dedicated page for children regarding the Coronavirus with helpful information for young people. Their phone counselling service is available through 1800 55 1800 and they also have email counselling and webchat.

• Beyond Blue is offering a Coronavirus Mental Wellbeing Support Service that includes counselling you can access 24/7 via 1800 512 348. They also have useful articles, an Online forum and their dedicated Coronavirus area will be regularly updated with information, advice and strategies to help you manage your wellbeing and mental health during this time. 

• The Black Dog Institute has released a dedicated Coronavirus resource area which includes digital tools, information and support services to help with anxiety, stress and wellbeing for young people, health professionals and the general public.

• This Way Up (jointly designed and developed by Professor Gavin Andrews and his team of psychiatrists and clinical psychologists at St Vincent’s Hospital, Sydney) is offering their courses free during the current crisis. Their online courses are designed to help you identify, understand, and improve psychological difficulties like stress, insomnia, worry, anxiety and depression. They have also provided a range of free downloadable guided workbooks with practical tips and strategies that can support your emotional well-being during times of stress and uncertainty.

• Smiling Mind has created Thrive Inside a special initiative to help you stay calm and healthy in the physical constraints of your home, while remaining calm and healthy inside your mind. Their page how mindfulness can help during coronavirus also contains practical tools and techniques to help you manage uncertainty, reduce anxiety and stay connected and grounded.

• Relationships Australia offers counselling services for families and tips on what you can do to maintain your own wellbeing whilst at home on their website 

• UROK? has released some helpful resources on how to stay connected during challenging times including where to find help and ideas on how to stay connected whilst in isolation. 

• Mindspot has released 10 psychological tips on coping with Coronavirus and have developed a helpful Coronavirus specific resource page. 

• Here is an interesting article from The Independent regarding helpful apps that you can download to help you stay calm during stressful situations. 

• This article from Karina Morgan of The Ethics Centre provides seven activities can be practised while experiencing physical distancing. They are proven to slow down the stress response and boost your mood. 

News articles

• Raising Children Network: Children and Coronavirus in Australia

• The Atlantic: What you can do right now to help slow the spread of Coronavirus

• ABC Daily Podcast: Coronacast
•  ABC News article outlining what tele-health bulk billing means for both doctors and patients

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:

• Red Cross FAQ

• Red Cross enquiry number: 13 14 95

• Book an appointment

• Bone Marrow registery 

More to add?

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