A Bunny Named MarTEN

24 02 2011

Theo's much loved, stuffed bunny, MarTEN.

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?”

He nodded.

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



20 responses

24 02 2011

Amy, It’s so true that little bits are the best for this age. When Sydney was younger and Lisa my sister had breast cancer (Don’s cousin), we had to give her bits of information so she could understand. I can remember the day we had a party at the house. Lisa did not want to wear her wig. She wore only her bandana.
“Where’s your hair?” Syd asked Aunt Lisa.
Lisa told her as bravely as she could, “Well, you know I’m sick and the doctors are giving me medicine to make me better and it makes my hair fall out.”
Syd asked, “Will you get it back?”
“Yes,” Lisa said.
“Okay then, see ya,” said Syd.
Our children know more than we give them credit for sometimes and can take on more sometimes also, but I still believe little bits are best. GO AMY!

24 02 2011

Two comments:

First on how children absorb stressful situations. Years ago when there was a major plane crash in the ocean, I think the Pan Am flight in the 90’s and my children were young, my husband was glued to the T.V. and newspapers were delivered with color photos of the wreckage. I tried to shield my children without much success. We had a backyard pool and the next thing I knew the kids had brought out their Fisher Price airplanes, Barbie and Ken dolls. The plane, the dolls were floating and sinking to the bottom, as they raced about madly rescuing them!

When I was diagnosed with early stage cancer, I knew this bout would not take my life, but I also knew my children had watched five of their classmates and a camp friend lose a parent to cancer over the previous five years—-all young parents late 30’s, early 40’s. Stomach, brain, prostate, bladder, breast, lymphoma and so the reality of death with a cancer diagnosis was not something to be dismissed.

After I shared with them my diagnosis and that it was early stage but would still require surgery and radiation, my 11 year old son asked me, “Are you going to die?” When I responded, “Yes, one day I will die, but honestly probably not from this disease.” His response was, “Well then, can I go down the street and play at the Bajorek’s?”

It makes me wonder had I said I was going to die, was his plan to stick around and wait it out . . . . .

Kids are sensitive to their parent’s pain and the fear of losing them is more than they can bear.

We are praying that both you and MarTEN get better quickly . . .

24 02 2011
Helene Rabinowitz

The acorn doesn’t fall far from the tree…a wise Mommy and a wise child. I love you both.

24 02 2011
Laurie Horn

You are an amazing mother, Amy!! I can still remember you coming over in your tank top and pj bottoms, walking the path we wore between our houses, in the cold winter wind; no coat, just boots. I was cold just thinking about it.

24 02 2011
Amy Rauch Neilson

Laurie! What a fun memory! You see? Some things just never, ever change! 🙂

Remember how I’d be in your kitchen every afternoon, sitting on one of the bar stools, when Steve came home from work, and I’d say, “Shift Change!” and go home…


24 02 2011

I’ll have to make sure MarTEN gets some good TLC this weekend too…
You’re such a good Mom, Amy.

24 02 2011
Gayle Waldrup

You all are so right about how children take in the information regarding cancer. I remember when I had to tell my son that his grandpa had cancer and that he was going through chemo and didn’t have any hair now. But the hardest part was telling him that the chemo didn’t work and that his grandpa was going to die (we were making every weekend trips north). I thought, how do I tell my son that he is going to lose the only grandpa he has, when I am finding it hard to believe myself?… We buried my dad the day before my son’s 11th birthday and he has never forgotten, even at the age of 23.

Now I have been waiting on a phone call to tell me that my sister (in-law) has come out of surgery and that they were able to get all the cancer. It made me cry to hear my brother say, “This is the first time in 40 years that my wife has something that I couldn’t fix.”

Yeah!!! Message from hospital… They think that they got it all…

24 02 2011
Amy Rauch Neilson

You know, I ordered that book and it came, and I read it to Theo, but I really thought it was just OK. I can do better. I’m going to write my own children’s book on this topic in the near future.

26 02 2011
Aunt Doris

Amy, Write that book. You are great with words and will do a super job. God bless. love ya, Aunt Doris

24 02 2011

I don’t know what book you’re referring to, but we have a book called “When Someone Has a Very Serious Illness,” by Marge Heegaard. http://www.amazon.com/When-Someone-Very-Serious-Illness/dp/0962050245. It has text and then places for the child to draw on each page.

My husband underwent treatment for lymphona from the time our daughter was 9 months old to 6 years old, and toward the end of that period we got this book and read through it together several times.

I think you’re doing it just right. Talk to him about it often, easily, but just in the little dribs and drabs that will make sense to him. Encourage him to ask you questions. Answer them simply and honestly.

It’s so hard when you have to worry about a little one at the same time as going through the illness, I’m sure. Hang in there! Best wishes to you.

24 02 2011
Jen Chinn

that made me cry.

24 02 2011

Very cool, one smart little boy!

24 02 2011

Also the ACS puts out a book for children — I’m not sure what age group they target — but you might find something there as well. I remember seeing it when I would order ACS literature for the Breast Care Center.

24 02 2011

Amy-I also borrowed a book to read to small children when I was diagnosed. I am a kindergarten teacher. Anyway, I can’t recall the title, but it was something about weeding the garden.

24 02 2011
Bob Adams

Go MarTEN! I see you both still have hair.

24 02 2011

This is so cute! Tell Marten to get better soon!

25 02 2011
Michelle Hicks

Another illustration of the AMAZING child Theo is, not to mention his mother! I love you both with all my heart!!

25 02 2011
Bob Deady

Amy, despite all he will have been through, Theo is going to do just fine, ’cause he’s got a really smart Mom.

25 02 2011

I remember that same question from my 6-year-old daughter, “Can I get it too?” Oh, that’s a heartbreaker, because you know they are trying to figure out in their young minds if this is like a cold, something they can ‘catch’ and be sick too. Cancer is difficult enough, but cancer while raising young children adds so much to the whole equation. Sounds like you’ve done a great job explaining it to Theo… you’ll all figure it out as you go along. God Bless you all.

26 02 2011
Aunt Doris

Amy, Do write that book. You are so good with words, I just know you will do a great job. And I truly believe that God will direct you in writing it, as well. love ya. Aunt Doris

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