Wednesday, April 28, 2010

Your Cancer, Your Kids. What's a Mom to Say?

One of the first things that come to mind for many women when they're diagnosed with cancer is: how am I going to tell my children?

Martha Aschenbrenner, KNIT (Kids Need Information Too) program manager at MD Anderson Cancer Center in Houston, has a quick formula to help you get a conversation started in your family.  She calls it the Three C's:

  • It's called Cancer.
  • It's not Catching.
  • It's not Caused by anything you did, or did not do.
Ms. Aschenbrenner is familiar with the topic as an educator, as a mother, and as a mother who was diagnosed with cancer when her own child was just four.  "Parents are at a loss when dealing with traumatic illness," she says, "because it completely upsets our normal role as a protector.  But silence is not honesty.  It is a lie of omission."

She has a number of great points -- which I'll list below -- as does CancerCare in this one-page handout.  Helping Children Understand Cancer.  Both underscore what you already know: be as honest as you can. You are already a terrific Mom.  Cancer won't change that.
  • Don't be surprised if they ask if you're going to die.  That's normal.  Reassure them that you hope not, and you are being take care of by wonderful doctors so you will live a long time.
  • Children react differently depending on their age.  
  • Explain what will happen.  Concrete information helps them know that they don't have to keep  you "under surveillance." This is especially true for kids twelve and over. 
  • Explain what will be different in their lives and daily routine.
  • Before a child comes to the hospital to visit, or your appearance begins to change, explain in advance what they will see, and as important, what they CAN (as opposed to can not) do. It will help me a lot if you can.....bring a blanket, show me your new drawings, etc.
Two books you may find helpful:
  • How to Help Children Through a Parent's Serious Illness, by Kathleen McCue.  St. Martin's Griffin Publishing.  An excellent handbook for parents who want information about helping their children deal with the parents's illness.  
  • When A Parent Has Cancer: A guide to Caring for Your Children, by Wendy Harpham, M.D., Harper Collins Publishers. 
In Texas, and for additional helpful information: Wonders & Worriesa nonprofit that helps children cope when a parent or caregiver has a chronic or life-threatening illness.

What did you find helpful in talking about your cancer with your children?

7 comments:

Annemieke said...

Dear Jody,
Thank you so much for yet another amazing blog. It is well written and gives me very valuable information which I sure shall pass on at the next cancer survivors spinning class.I get so many questions and I usually turn to your blog for the answers. Thanks for sharing, big hug, Annemieke

Dianne Duffy said...

Hi,

It's always hard to tell kids anything difficult. But I have to disagree with the part about "it's not catching". My kids were 16 and 17 when I was diagnosed. The genetic test confirmed that I was BRCA2 positive. This had some serious implications, especially for my 17 year old daughter. And it doesn't only affect women, I caught my breast cancer from my dad, the owner of the gene.

When I was diagnosed, I had many offer from friends to help. I wrote down everyone's name and number and how they offered to help (food, drive, other), and put them all in a list. If we had a need, we would just go to the next person on the list and get the appropriate help. My 16 year old son was able to get rides to classes and music events from 21 people. One of them even let him drive HER car with his driver's permit!

Jody said...

Annemieke,
To think that the info helps someone is awesome. Living near an incredible medical center helps me access all kinds of great info and I'm glad to pass all of it on. If you run into questions about different issues in your spin class please let me know!
Hugs,
Jody

Jody said...

Diane,
I'm really glad you stopped by. Yes, the BRAC gene does bring up a lot of considerations. I hope you're doing well now? And your family?

When I was in treatment I met an incredible woman, Sue Friedman,who tested positive for the BRAC marker and established-- FORCE - Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/)to help women with the same medical issue. Her organization is terrific if you're not already aware of it -- and there is a conference coming up in June.

That's a great story about your son, too!

Please stop by again,
Jody

Debbie said...

Hi Jody, Great post. As a mother of one who was 9 at the time I was diagnosed I know that my greatest concern was telling her. She is very attached to me and deals with some anxiety issues and I thought this would put her over the edge. But I remained calm and while we were playing one day I told her I had breast cancer and was going to have an operation to remove it and then have chemo to make sure it doesn't come back. She dealt with it amazingly well in that moment but over time I could see her concern leaking out. And from time to time she would ask questions. The thing she disliked the most was me losing my hair. I guess it was such a obvious reminder that I was sick. And now that she is older she does get anxious each time I have a PET Scan waiting to hear the results. And she has concerns that she will get breast cancer too. But I tested negative for the BRAC genes and I tell her that just because I got it doesn't mean she will and here is how we can work to prevent it.
It has to be one of the hardest things for me about my cancer, that it has touched her life. But I know she looks at me and thinks I am strong since I beat it twice and she is proud of me for that.

Jody said...

Deb,
Funny, I was thinking of you and Sophia today while I was cycling. My thought was the fantastic example you have made for her: you had a bad diagnosis, did the drill, fought it again, RAN A HALF MARATHON LAST MONTH. It she had not been anxious about you illness there would have been even MORE to worry about. I am grateful and admire your example so much. You rock!!! Thanks so much for writing.

Missed you gobs while you were gone,
love,
Jody

dahlan epsoner said...

Dear Jody,
This is a very informative article about cancer. Thanks you so much for sharing this one.

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