After the Diagnosis: Advice for Parents, Friends and Family

A childhood cancer diagnosis is devastating for any family and has ripple effects throughout an entire community.

Often when a child is diagnosed with a serious illness, you may feel helpless.

A diagnosis of any serious illness can be isolating for the family. Not only is their world turned upside down, they are coping with shock, grief, and the logistics of how the family will continue to function in light of the diagnosis.

For some, this may mean that the family needs to be apart for some time – while one parent cares for the ill child, in or close to hospital, the rest of the family may stay at home.

It can also be isolating in terms of maintaining social contact, as even minor things like a family outing can become a logistical nightmare. What the family is able to attend will depend on chemo cycles, blood counts and a myriad of aspects beyond anyone’s control.

Advice for Parents:

Whoa! What just happened? One minute you are in the middle of daily life, the next your child has been diagnosed with cancer. From one parent to another this is my advice:

1. Be kind to yourself.

It’s not your fault. No one expects to have a child diagnosed with cancer. Go easy on yourself.

2. Rest, eat, sleep and take time out to recharge your batteries.

This is a marathon, not a sprint. Unless you are looking after yourself, you won’t be able to properly look after your child or your family. Think of it as the oxygen mask in an aeroplane scenario – fit your mask first before fitting anyone elses.

3. Learn to say yes.

Accept help that is offered, be it meals, assistance with other children or lifts to the hospital. There is a support network around you that you don’t even realise exists, but you first need to swallow your pride and accept help. If you need to, lean on the support services offered by your social worker.

4. Find a shoulder to cry on.

Having someone that you can tell the “warts and all” version is invaluable.

5. Nurture your relationship with your partner.

You need them and they need you. Each person will process and approach the diagnosis differently. Neither approach is wrong. Understand that they are experiencing the same emotions as you even if you address it differently.  

Reaching out for professional help can help families deal with unfamiliar feelings, providing an external perspective and tools to help you process your feelings. The Children’s Cancer Foundation funds face-to face counselling services, providing the flexibility to choose a professional close to home.

6. Make connections with other families who have travelled or are travelling the same path.

No one understands what you are going through like a family who has faced a similar diagnosis – the fears, the challenges. Connect to other families through childhood cancer charities. It is likely you will find someone who understands what you are going through without you having to say anything.

For instance the Children’s Cancer Foundation hosts Family Connect, a complimentary morning tea at The Royal Children’s Hospital each Tuesday morning, to meet and connect with other families in a relaxed atmosphere.

7. You are your child’s advocate.

Take time to understand your child’s diagnosis. Ask questions of your child’s oncologist and oncology nurses. No one knows your child like you do. If something doesn’t seem right, raise it.

Friends and Family: How Can You Help?

Here are some easy ways that you may be able to ease the load of a family with a cancer diagnosis:

What should I say?

“Hi, how are you going?” is a great start. The hardest thing for families at this time can be when friends and acquaintances avoid them for fear of saying the wrong thing. Address the elephant in the room – “sorry to hear your news”. Openings like this give the family an opportunity if they want to talk, or respond “fine thanks” if they don’t.

What can I do?

Be present. Offer practical support, like picking up groceries and dropping other kids to extra-curricular activities or play dates. Offer to be available to look after siblings at short notice if the unwell child needs to be taken to hospital. Also understand that plans need to be cancelled at the last minute due to the unwell child’s condition changing suddenly.

Start a meal train, an initiative aimed at simplifying the organisation of shared meal giving around significant life events. Whether it’s for one or several nights per week, your help will be valued. Often it is hard to ask for help, but having someone else ask on your behalf takes away the pressure. Having meals prepared on days when a child is receiving treatment can ease a burden for the family.

Remember the siblings

Everyone asks after the unwell child, usually in front of the siblings. Remember that the siblings are doing it tough as well. Their routines have abruptly changed and they are probably feeling left out on a number of fronts. Remember to ask how they are doing and try to keep some form of normality for them, whether it be through outings or making sure they can get to their sporting or other pursuits.

Your support is invaluable – and appreciated

Lots of little things make a big difference for a family of a child with cancer. Thank you for all you are doing and thank you for caring.

Thank you to Heather for sharing her advice as to how to navigate the days, weeks and months following a diagnosis.