Friday, March 30, 2018

Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved

This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.

How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.

He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear.

Wait until he finds out about this blog.

Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?

I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.
  1. What rang true again and again in our family was share age appropriate truth, but don’t overshare. 
    • a.  For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. 
  2. Only answer their specific questions. 
    • a.  When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.
  3. Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.
I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.

What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, The Magic Tree, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.

Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.


There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.



The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).

Even though I’m not in treatment for cancer anymore, I’m going to keep using The Magic Tree with Quinn to prompt our discussions of cancer, to help us both process what our family went through.

Thursday, March 29, 2018

Seven

Dear Quinn-Love,

Earlier this month, you turned seven, and somehow for the first time, it wasn't bittersweet for me to see another milestone pass. When you woke up and gleefully announced, "I'm seven!" I celebrated along with you and happily made chocolate chip pancakes for breakfast. Finally, I no longer wonder if this might be my last birthday with you. The fear of cancer isn't as ever-present as it was for so long, though dammit if I don't have to be terrified of gun violence while you're at school now.


I asked if you’d miss being six and you said, “No,” but then quickly added, “well, maybe a little because it’s the year I became a brother.” Our lives got flipped upside down AGAIN this last year, but you couldn't have been happier to learn you'd be getting a sibling. "This is the best gift EVER!" you exclaimed when we told you over pink cupcakes. And because it's you, you actually meant the baby growing inside of me, though you were excited about the cupcakes, too. 




Watching you become a big brother has filled my heart more than I ever thought possible. You ask at least three times a day to hold your sister, and you play games like "I spy" with her in the car, making up what she might be spying based on what you've learned about how far she might be able to see.

“I’m proud of you,” I reminded you the other night.

“But I’m even more proud of you,” you said, and then added: “Even though you don’t do anything, really.”

Oh, child. I want to rage against that statement but I am too exhausted. And also it makes me laugh. I hope someday you know I've done everything I can to make your childhood as well-adjusted as possible, despite getting off to a rocky and terrifying start.







“Let’s be penguins,” you said to me as I laid down next to you a few weeks ago. “What?” I smiled. “They snuggle to keep each other warm,” you explained. And so we snuggled because it was an unusually cool winter in Phoenix and because I will always love lying down next to you listening to your thoughts, listening to you breathe. I am as reluctant to give that up as you are to give up your iPad when you're watching the Best All Time Football Plays on kids' YouTube.

It seems as if you are either watching (or playing) sports or reading all the time now. It's March, and you've embraced everything about basketball finals, calling out favored teams and star players like you've followed these games for years. I swear, you could have a career as a sports announcer right now. The other day, you asked, "Mom, what does a person do if they don't get drafted by the NFL?"

"Whatever else they want, buddy. You could be a scientist, a teacher, an artist..." I started to explain.

"Well, I guess I better get drafted because I have no idea what else I'd want to do!" you replied.

"Honey, you're seven. You have a long time to figure it out," I tried.

"I just hope I get drafted by a team I like," you continued.

"Me, too, kiddo," I conceded.

We read a bit together at night — right now, A Wrinkle in Time or the Captain Underpants series. You're devouring these chapter books, and I love seeing you get lost in these fictional worlds.


As I remind you it's lights out at night, I tell you I love you more than anything.

“I love you even more than that,” you respond.

“I don’t think that’s possible,” I say.

“But it is...” you chime.

And if it seems like this is all too sappy to be true, that’s only because someone hasn’t met you yet. You are all heart, my sweet boy.

Don’t get me wrong, you’re also stubborn about trying new foods, clingy at bedtime, and slightly over-the-top pouty when you lose at a board game. But I still think you’re perfect.

To which I'm sure you'd say, "Nobody's perfect, mom."

I won't concede on this one.

I love you, Quinn-Bug. Happy (belated) seventh birthday!

Love,
Mom