September is Childhood Cancer Awareness month - a time to increase pediatric cancer awareness, support families facing a diagnosis, and raise funds for research and prevention. Cancer is the leading cause of death by disease in children under the age of 15 in the United States, and it’s a cause that’s so important to us. That’s why we make a donation to Alex’s Lemonade Stand Foundation for every Little Sleepies purchase.
To help us understand how to help families going through a childhood cancer diagnosis, we connected with mother, blogger, and Little Sleepies customer, Danielle Moss. Danielle’s daughter Margot was diagnosed with Leukemia in May of 2020, and she’s been dedicated to spreading awareness and raising funds for childhood cancer ever since. Here’s her advice on how to help a family going through a cancer diagnosis:
When should I reach out to a family that’s going through a cancer diagnosis?
If you do not regularly communicate with the person going through this but want to reach out, I would send an email or text 3–4 weeks after diagnosis. Let them know you’ve been thinking of them but wanted to give them some time before reaching out. It’s not that we don’t want to hear from people. We do! But in the beginning, we’re just trying to survive. Instagram comments or messages on a CaringBridge site (if they have one) are wonderful. There’s no pressure to reply, and it’s nice to have everything in one place when you feel ready to read it. Those messages of love lifted me up.
If you regularly communicate with the person going through this, send a message letting them know you love them and that you’re here for them. Continue to send those messages. It doesn’t have to be daily, but regular check-ins every few days to a week and ones with no obligation to reply (and no questions) made more of a difference than I even realized at the time.
What are things I should avoid saying?
Don’t ask questions unless they will help the person who’s going through trauma. I can tell you that every mom I’ve spoken to has said this is a big one for them. No one ever wants to answer these questions. They’re extremely painful. Don’t ask how they’re doing in the beginning (they are not okay). Do not ever ask about symptoms, diagnosis, or prognosis. A parent or patient will only share that information if and when they want to share it. It will not help you and forces us to relive the trauma.
Don’t say I can imagine or I can’t imagine. The intention is pure, but it’s not about you. Don’t tell them that they’re strong or that this is happening for a reason. A cancer diagnosis is not the time for a “me too” moment either, so if you’ve been through a hard time but haven’t gone through cancer, do not try to relate. Do not mention any stories that resulted in someone relapsing or passing away ever. If I hear one of those stories now, I feel completely crushed and terrified. We cannot hear those stories. Share them with someone who isn’t going through it.
Do not talk about your child’s ear infection or minor health issues. It’s not that we don’t care, but we’d give anything for that to be what we were dealing with. What we’re going through doesn’t erase that things still feel hard for you, but it’s too much for us right now.
What should I send or give?
If you want to do something in the form of a gift, talk to a close friend or relative and find out their needs. Maybe they need food or gift cards, or even a GoFundMe to help with expenses during treatment. Don’t send celebratory items (cake, cookies, etc.).
My friend sent me a message letting me know she was putting together a bag for the hospital. She didn’t leave room to say no – she was actively working on it and sent individual texts with everything she thought I might need, from a notebook and socks to dry shampoo and a facial mist – and asked me to thumbs up or heart what I wanted. It was easy, and I felt so loved. She’s also personally been through this and knew what I needed at the hospital.
Another friend saw me outside my house – it was my first time home since diagnosis. She ran home and came back with Daily Harvest smoothies, a blender, and a cooler for us to borrow. Those smoothies sustained us while we were at the hospital. And a new friend (a mom going through the same thing with her little girl) sent flowers when Margot finished her treatment. I cried so hard when I read her note. We did it, and I knew we were in this together. The flowers were lovely, but honestly, the note was everything I needed.
What else can I do?
The best thing my friends did and you can do is continue to stay in touch. Check-in. Show up. It is so important to keep showing up, especially in the months after diagnosis. Keep saying hi. Let your friend know you’re thinking of them. It’s so meaningful when months later, or during a hard part of treatment when someone remembers that things are still hard and wants to make sure you’re okay.
That is the very best thing you can do. Continue to show up and don’t ask for anything in return. One day, your friend will be able to be the friend you deserve, and they’ll be here when you need them most. Right now, they’re hurting, and they need you.
If a family is going through a cancer diagnosis, where can they go for support?
Going through a cancer diagnosis, especially during COVID, is one of the most isolating things you can experience. Nobody knows what you’re going through except for other parents that have been there. Find connections with other parents going through the same thing, build a network and a support system. And if you’re not sure where to start, I’d love to have you join mine.
Anyone can support families (even those you don’t know) experiencing childhood cancer by supporting Alex’s Lemonade Stand Foundation. And an easy, fun way to get the whole family involved is to participate in ALSF’s Million Mile virtual fundraiser this September. Sign up to run, walk, or cycle together and give hope to kids fighting cancer.