Tuesday, November 21, 2017

Talking to Raine About Daddy's Radiation

It was a quiet Monday night. We finished dinner and Raine was anxious to watch the tv show The Voice, his latest obsession (he is rooting for Noah). Rather than head for the living room, I asked him to stay at the table for a talk. I was flying by the seat of my pants in an attempt to tell him about Dan’s radiation appointment the following morning. Dan didn’t even know it was coming.
First, I busted out his creepy puzzle that reveals all of the anatomy of our bodies. It lets Raine place puzzle pieces in layers–skeleton, organs, muscle, and skin, as well as the clothing worn on the outside. (Made by Hape, you can find it here.)
As he put the puzzle together, I told him daddy would have a doctor appointment in the morning that would be radiation for his brain. We looked at the brain piece of the puzzle and I said it would be like super cool lasers as medicine for three places in daddy’s brain.

Second, I had him look at our Kimochis® emotions. (You can find them here.) This is the first time I used them and it went really well. First Dan and I picked ones that showed our emotions about the procedure. Then Raine chose Scared, Shy (he had it equated with feeling uncertain) Grateful, and Loved.
Third, I asked him to help me think of ways that we could help him with his emotions. We made a list for each one:
Scared – Have daddy tell him all about it when it is over and answer any questions Raine has.
Shy – (Uncertain) Hugs before school.
Grateful – Make a thank you card for the surgeon.
Loved – Hugs AND kisses after school.
He made his card for the surgeon and then spent a solid twenty minutes in a competition of throwing the plush emotions from the dining room to the front door as far as he could.

On the way to school in the morning, Dan sent us pictures of him getting ready for radiation. Of course Raine wanted to know if it would hurt. We told him no. (The pins Dan would have drilled into his skull would actually be one of the most painful things he has ever experienced. But would you ever let your kid know that? Nope.) We tried to emphasize daddy was fine because he was smiling and looked a little silly. Raine was still scared for Dan, and about it hurting. He told me he hopes he never has radiation. I agreed that I hoped I never would, too.
So the photo backfired…Later that day, I asked Raine how long he was scared or worried and thinking about daddy while at school. He honestly informed me that he did all morning–until his favorite time, recess and lunch. However, that night, even with Dan in bandages all over his head, Raine felt ok because he knew why they were there, Dan answered all of his questions, and Raine received lots of hugs and kisses from mommy.

Raine is 6. He is very aware of how we act and what we talk about when we think he isn’t listening. He is picking up more references to cancer–particularly during the 2,000 commercials about cancer drugs during one episode of The Voice. Dan and I had the equivalent of scanxiety x 1,000 leading up to radiation and everyone can feel that–even Rocco, who paced and howled more than usual.
I want Raine to know when Dan is having treatments and help Raine understand what will happen. I want him to be prepared. I want him to feel included. This is big stuff, after all. Big stuff I would rather he not have to deal with–but this is our family and our journey.


  1. RACHEL: Leah, your preparation with Raine is so incredible – even if it feels seat-of-pants – vital, tender, respectful. The naming of emotions and recognizing their fluidity during a time of growing awareness is hard. Ramona has seen a lot more TV commercials about cancer, stories about kids and adults who were treated and survived or didn’t. She’s becoming more aware of the seriousness of it – though hard to say how much she realizes that follow-up visits are checking for signs of recurrence and not only healing. We have the creepy Hape peel-the-body-layers too (the girl, and the pregnant woman, which was on a sale table!) and have tried over the past two years to talk about, and will continue to talk about the side-effects of radiation. She’s interested in doing an Alex’s Lemonade Stand to raise money for cancer research. She wants to win money on Kids Baking Championship to give to Lurie Children’s Hospital and Ronald McDonald House-Chicagoland. What to do with the connections, the questions, the desire to *do* something? We’re working on it. There is also the ongoing work to encourage home therapies for post-tumor and post-radiation impact. The ongoingness is what I always try to communicate to people. This is our life, and we’re in ongoingness with cancer. Thank you for conveying your ongoingness – it’s painful to connect here, but I’m so grateful to know your wonderful family even if at a distance.

  2. CHRISTIE: Sending you all sorts of love and comfort. You guys are stronger than you know and are always in my thoughts. Much love to you all.