I get these questions a lot: How much does Theo know? What do you tell him?
I share with him whatever I think is age-appropriate. Theo is a very bright, inquisitive five-year-old little boy. But he’s still a five-year-old little boy.
The first time I was diagnosed with breast cancer, Stage 1, March 3, 2006, Theo was six months old. That he was an infant was to our advantage, at least in the “what to tell him” part of the equation. I knew he wouldn’t remember all that our family went through in the months of my treatment – including my hair loss from the Adriamycin/Cytoxan chemo cocktail I was on.
In fact, it was a little bit humorous that both Theo and I were bald at the same time – his hair grew in very slowly from birth – and our hair seemed to grow in tandem until somewhere around Thanksgiving 2006, we both had a short ‘do!
This time around, my first thoughts after diagnosis were of Theo and what and how we would tell him. I knew there was an age-appropriate way to do it; I just wasn’t sure what it was. So, I called a close friend, Helene Rabinowitz, who had spent more than 30 years as a practicing psychologist, and bounced it off of her.
“Tell him in little bits and dribbles, as best you can,” she said.
“But how will I know when it’s enough, or too much?”
“Trust me,” she said. “You’ll know.”
And she was right. The first time I broached the subject with Theo, we were sitting on the couch together in the family room.
Theo had been asking me why I had to go to the doctor’s all of the time, and why Daddy had to go with me, too.
“Honey, Mommy is sick, and so the doctors have to give her medicine.” I went on to explain as best I could that I was going to get better, but it was going to take a little bit of time.
He listened for a while, then abruptly, he jumped down off the couch and went and picked up his favorite monster truck. He started racing it on the kitchen floor, accompanied by very loud “zooooooooooommmmmmmmm” ing sound effects. Helene had been right. I knew when he’d had enough.
Last week, we made much more progress – and some very amazing progress at that.
Theo has bunk beds in his room. He sleeps on the bottom bunk and I am the one who puts him to bed about 90 percent of the time, even in this period of chemo. I’m determined to do as much of our “normal” life as I possibly can throughout my treatment.
A few nights ago, we were laying together on his bottom bunk. There’s a little light that hangs down from the bottom of the top bunk, and all the lights were off except that one. I got out a book to read to him, as I do every night.
I always wear a tank-top to bed. I’ve always run very warm – my whole life. So, even on the coldest winter nights, I wear a tank top and pj bottoms. This is significant because it’s one of the few times Theo can actually see my chemo port. He doesn’t like it. He doesn’t like the incision next to it, where they went in to place it. He doesn’t like the port itself, which is under my skin but is a decent-sized lump – like the size of a silver dollar, raised.
He asked me what my port was for. I put down the book we had been reading and said, “Honey, that’s what the doctors use to give me medicine.”
He thought about that for a moment. Then he said, “Is what you have an allergy?”
“No, honey, it’s not an allergy.”
More thought and contemplation.
“Is it a germ?”
“No, honey, it’s not a germ.”
“Then, what is it?”
I started really calling upon my brain power to figure out how I could best explain this to him. Finally, I said, “Do you know what a cell is?”
“No,” he said.
“Well, our bodies are made up of all these teenie pieces called cells. They’re so small we can’t see them without a microscope. Our cells do good things for our bodies – they help us to grow bigger and stronger, and they repair our skin when we’ve got a boo-boo.
“But sometimes, cells can be bad. Mommy has some of these cells in her body right now. These cells are the ‘bad guys’ – like the bad guys vs. the good guys in some of the games you play. The bad guys try to take over, so the doctors give me medicine that makes the bad guys go away.
“Does that make sense?”
Then he said, “Mommy? Will I get what you have?”
“No, honey. What Mommy has isn’t something you can get. (This is true from the perspective of the BRCA 1 gene. He can be a carrier, but he won’t “get” genetic breast cancer.)
“Does that help?”
He nodded again.
“Mommy? Will you always have to have a port?”
“No, honey. When the doctors are done giving me medicine, they’ll take my port out.”
I thought the conversation was over and started to go back to reading the book.
That’s when Theo began talking to his stuffed bunny, whose name is MarTEN – not Martin. Theo insists the bunny’s name is MarTEN.
He told me that MarTEN was sick and had a port. He showed me where the port was on Marten’s body. Then he told me that since Marten’s legs aren’t working, the doctors were giving him medicine to make him all better. As soon as Marten’s legs start working again, the doctors will take his port out.
It was quite profound – the way this kid was able to understand and transfer this information I’d given him from me to his pet stuffed bunny.
Wow. Five years old.
Copyright 2011, Amy Rauch Neilson