Telling little kids about cancer

I keep meaning to put together a brief set of blog entries for newly diagnosed women; short summaries of some of the top questions or concerns or areas of interest. Well, today someone on the YSC boards asked a question about how to tell her small children about her diagnosis, and this is what I replied. In case anyone out there in internet-land is searching on information about telling children about cancer, I thought I'd share my experiences here.

(This is a repeat of information found in a variety of earlier blog entries, probably not relevant to my friends and family at this time.)

The book "Sammy's Mommy Has Cancer" was INCREDIBLY helpful to me; it doesn't discuss mastectomy directly but it talks about chemo, baldness, surgery, fatigue, etc. It's available on Amazon and in other bookstores. My daughter asked us to read it to her every day for months, because it helped her to understand.

I was very straightforward with our daughter, who was 2.5 at the time but highly verbal. We used the words "breast cancer" and explained that our bodies are made of cells that work together to make us strong, but the cells in Mama's breast had turned to bad cells that made me sick. We explained that the doctor would cut out the cancer and give me strong medicine to make me well, but that the medicine would make me tired and bald. We were very careful to explain that this was unusual, and not something that little kids could get. We made sure that she understood it was not like getting a cold or a fever or a sore throat, so she didn't need to worry about herself. (I know kids get cancer, though not breast cancer, but the idea was to help her to not worry if she got a sniffly nose that next they'd cut her breasts off.)

I never quite explained that they would be removing my breast along with the cancer...I meant to but never figured out how (eventually, both breasts, but initially, just one). My daughter walked in (barged in!) to the bathroom when I was just a few days post-op and I was coming out of the shower, and exclaimed "Mommy has only one nipple!" As calmly as I could, I said, "Yes, the doctors had to take off Mama's breast to make sure they got all of the cancer." Because I knew that I was going to get reconstruction, I said, "It's okay with me because I'm glad the cancer is gone. And one day, the doctors are going to build me a new breast!" That became my daughter's understanding: this was temporary, and I'd get new breasts. She seemed pretty okay with it.

I talked to the psycho-onc and read books about what to share with her, and what was recommended to me was to be as straight-forward as possible without overdoing it. (We've never talked about mortality issues, and won't unless something changes.) I also learned that children's number one fear is that they are not being told the whole truth or that they are being lied to, and so I was encouraged to be as open as possible. This worked for us, because it's how we do most things, not just big stuff like cancer. My daughter was not thrilled to have cancer in the family, but I don't think it terrified her, either.

Everything I read said to tell the child that it is NOT their fault. This seems obvious (of course it's not their fault!) but children make some strange leaps of logic, and many children have been known to say "If only I didn't bug Mom so much she wouldn't have gotten sick" or "If I was good she'd get better" etc. You want to nip that in the bud right away and state up front that it's nobody's fault.

I also told my daughter that she was the person who could help me to feel better. Her smiles make me happy; reading stories to her makes me happy; playing games with her makes me happy. When I was really sick it made me happy when she made things (cards, bead necklaces, simple things) for me. I tried to let her know that it was her job to just be a kid, and that just having her around made me happy. The idea was to give her some power in the situation to make HERSELF feel better, rather than just be a powerless bystander.

At age almost 5, my daughter knows about chemo, radiation, Herceptin, reconstruction, mastectomy, etc. This is part of her childhood, and that saddens me....but it's also the reality. Some kids deal with divorce, poverty, and other losses, and my daughter has had to deal with cancer. It's part of her normal, now.

Our way might not be right for everyone, but it's been great for us. I'm delighted to say that my daughter is pretty well adjusted - a happy, smiling kid who loves to play on the monkey bars, is learning to read, and begs for playdates fifty times a day. She's also capable of throwing an impressive tantrum, or whining when she doesn't get her way. In short, she's pretty normal, despite the abnormal features of her childhood.

I hope you get something out of this book that helps you. I'm pretty passionate about the subject, as all of my deepest fears about cancer are about its impact on my daughter. I hope I've given you something positive to give you hope that your kids will be okay, too.