It's hard to know how to support friends or family who find themselves on the childhood cancer journey. Here are some tips for you from caregivers with lived experience.
By Rachel Dawson
At The Beginning
The diagnosis has most likely pulled the rug out from under us. In the beginning, we don’t have all the answers – we may not even know what the treatment plan is yet. This means that we may not be able to tell you how to support us. Although you may want to ask questions and jump into action at this point, you don't always have to do something.
A quick text, call, or email to let us know you’re thinking about us really means a lot. However, please don’t be offended if we don’t answer. Not only are we on duty 24/7 with our child, but we have now shifted to a type of "survival mode."
Many treatment families find or create a way to communicate: a group chat, a Facebook group, a blog. It’s best to not make assumptions about how the family wants to keep in touch (or even if they want the diagnosis and journey shared).
Go with the family’s preference of communication channel and help support this – check it so you know what is happening. This is also a great way to be aware of the family's current needs.
Not all treatment costs are covered – for example, the family usually pays out of pocket for medications that counteract the chemo/treatment. Gas, parking, hospital stay supplies, equipment for accommodation, childcare for other children, counselling, physiotherapy...it can add up quickly. In addition, treatment is 24/7 and usually for a long period of time. This means a parent may be taking a long-term leave from work. WIth this in mind, here are some ways to help with these practical burdens.
Get the family's permission before starting a fundraiser, and ask what they are comfortable sharing.
- Crowdfunding platforms like GoFundMe can be great, but check to see if a campaign already exists for the family before starting a new one.
- Hold an event – it could be something simple like a pub night, with 50/50 draws, a silent auction etc.
- Collect unused gift cards – have family and friends donate them.
- Hold a bottle drive and/or open an account at a local bottle depot for donations.
- Sell crafts or homemade goods. Help raise donations and promote talent by having a percent of sales donated. For example, we had a friend make beaded bracelets, which were sold on Etsy.
- Gas cards, grocery store gift cards, and credits or gift cards for meal delivery services.
- If you're coming to visit, ask if there is anything their child is craving that you can bring (meds can do this).
- Travel-sized games and art supplies can be helpful for long hospital stays.
- Offer to provide a stock of frozen meals.
- Don’t forget about gifts for siblings!
Other practical ways to help
- Donate blood. Transfusions are common and important treatments in childhood cancer and blood disorders. My daughter loved blood donation posts with her tagged – it showed that people understood how important blood and platelets are in the cancer world.
- Donate hair to charities such as Wigs for Kids.
- Organize a yard clean up, garbage run, or car wash/clean day.
- Choose a day each month that you drop off a meal or organize a meal train.
- Make sure they know about the meals that WCK can provide and their resource guide.
Siblings of children with cancer or blood disorders need attention and support, too. My sister took our little daughter out to a coffee shop once a week and helped her through a learning workbook.
This was a godsend – not only was it their special bonding time together, it also took pressure off me so I could focus on other things.
Ideas for siblings
- Offer to be the emergency pick up/emergency overnight care when needed.
- Take them to, and show an interest in, their extracurricular activities and hobbies.
- Take them out, even just to the park for a few hours.
- Help to plan or host their birthday party.
- Let the family know that WCK Hangouts are open to siblings as well as kids & teens who have had a cancer/blood disorder diagnosis.
Please don't disappear on us.
Cancer treatment is a long journey – it’s also very isolating and we need friends and family throughout the whole journey.
Let us know that you are still there and that you are thinking of us.
Even if our child is in remission or has finished treatment, our world has changed forever. Many people think that, when treatment ends, life goes back to normal. It doesn’t. We have to – and will probably struggle to – find a new normal. This new life is full of follow-up appointments, accommodations, fears, and worries – these will continue for the rest of our child's life.
Not sure what to say?
- Instead of saying "I understand" (you can't), try something like, "I may not understand, but I am here to listen."
- Instead of saying "You are so strong!" (trust me, we don’t have a choice), try "How are things going? Do you need to scream things out? I am here to scream with you!"
- Avoid asking, "Are you worried your child will relapse?" Yes, of course we are.
- Don't share personal opinions and beliefs about cancer and its treatment unless we invite you to.
- Sometimes, the fear of "getting it wrong" leads people to say nothing, which can hurt. We're still the same people you know and love, and when you find small ways to show your care and support, it means the world.
Send us your ideas of how to show up for families navigating childhood cancer and blood disorders. We always want to learn more about how to provide real, meaningful support.