Two moms, Mindy Dykes and Laura Sobiech, both with sons affected by childhood cancer, offer up some words that lifted them up during their experiences and tell us which comments would have been better left unsaid.
Here are good options of what to say:
“I am so sorry for the struggle you face—I think of you often—and I wish every good thing for you and your family.”
LS: These are simple and acknowledge the hardship. They let me know you care.
MD: What I’m thinking when you say this: “ Thank you, we love being remembered and we want to think of good- ness in our futures, too.”
“I pray for you every morning,” or “I pray for you whenever I’m at church.”
LS: It’s nice to hear specifics. It lets us know that you really are doing what you say. And, I liked knowing that people were praying for us because, quite frankly, there were days when I couldn’t do it.
“I heard your son has cancer and that really, really sucks.”
MD: Thank you for being plain, simple and on point.
“I don’t know what to say. I wish desperately that I could make this go away for you. Can I bring you a meal on an evening this week?”
LS: is is authentic and it gives a very specific action.
“Your son’s (or your) strength is inspiring.”
LS: I’m proud of this kid of mine; the kid I have a front row seat to watch him suffer with such grace. His strength inspires me, too.
MD: I’m glad you’ve noticed because I am scared and this helps me gain the confidence to keep going.
And here are some phrases that are better left unsaid:
“What’s his prognosis?”
LS: I don’t want to think about my child dying. I want to focus on him living. If you don’t have an immediate family connection or extremely close relationship with the family, you’re better off just Googling the disease and prognosis.
“How rare is this diagnosis?”
MD: My son’s disease is very rare, we are terrified and we only want to focus on how to save our child. It doesn’t matter common, uncommon, good or bad it seems. Cancer has invaded our child’s body and it sucks.
“Seventy (or any other) percent chance of survival is pretty good.”
LS: I actually had someone say this to me. I felt like asking him how he would feel if someone knocked on his door and told him that his son had a thirty percent chance of being dead in five years. Anything other than one hundred percent is not “pretty good.”
LS: I hated it when people said this. It sounded too much like a lecture. It implies that we were thinking of giving up and no one just gives up. But there are times when we have to decide how to do the cancer thing. What we decided as a family might look different than someone else’s decision. But, we would never give up.
“I know exactly what you are going through because my (insert distant relative here) had cancer.”
LS: No. You don’t. You have no idea what it’s like unless you have watched your son die from a vicious disease. I get trying to show empathy by drawing from personal experience, but it’s best not to imply a parallel experience unless you really do have one.
“I don’t know how you are handling this, you are so strong.”
MD: What I’m thinking when you say this: Nope, I’m not actually handling it at all. I’m numb and trying to keep going each day.
LS: I’m not a hero for taking care of my child. You would do it too. This just made me feel awkward and I was never sure how to respond. Maybe say something like, “I admire your strength” instead. Then, all I have to say is, “Thank you.”
“What do you think caused it?”
MD: It’s best not to go here. It leaves open the thought that I may have done something to cause my child’s cancer or that I could have prevented it. The cancer started growing when he was in my womb, where he was supposed to be safe, and that’s a haunting thought.
“Have you tried….cannabis oil, baking soda & maple syrup, taking him to a chiropractor in California…?”
LS: I probably have not tried those things because my countless hours of research turned up nothing to support it. I actually had a man come to my door just days before Zach died with this kind of question. Did he really think I hadn’t checked into those kinds of treatments years ago?
Maybe you’ve said one of the “What Not to Says” and thought you were helping. And maybe the person you were saying it to smiled and nodded like they appreciated it. And, maybe, they actually did appreciate it. You may be scratching your head wondering what the formula is here.
Here’s what it boils down to:
Think about the response you are soliciting. Is the thing you are about to say going to be helpful to the person you are saying it to, or is it really just going to make you feel better?
Meet Mindy & Laura
Community Outreach Coordinator
My son was diagnosed at 6 weeks old with a brain tumor. It was massive and required emergency brain surgery and an aggressive plan to treat the remaining cancer cells. Connor made it through surgery, survived chemotherapy and a bone marrow transplant all before he was 7 months old. Now, ten years later, my husband and I are navigating survivorship late effects, raising his pre-teen sister and always striving to keep life in balance. My passion is to help other families on this journey and make a difference in the world of childhood cancer.
Community Outreach Coordinator
My son, Zach, was diagnosed with osteosarcoma when he was 14 years old. We spent 3 1/2 years battling the disease, holding onto hope and learning to let go. Before Zach died, he wrote several songs to say goodbye. His most well-known song, “Clouds”, has helped raise awareness about childhood cancer and has raised hundreds of thousands of dollars for research. My work at Children’s Cancer Research Fund allows me to invite other families walking a similar path as ours to share their stories and join in the mission of raising awareness and finding new treatments for childhood cancer.