how much (and when) do I tell my daughter?

fireba

I was just diagnosed yesterday. IDC, 1.7 cm, grade 3, triple neg. Also had an extensive necrosis DCIS. I'm scheduled for re-excision lumpectomy (because of close margins) and sentinel node biopsy on 3/5. Because of the size of the tumor, I'll definitely need chemo and radiation, regardless of the results of the node surgery.

So my question is: what do I tell my 9yo daughter? I don't want to scare her, but I obviously need to give her some information. She's smart enough to understand a lot, but just doesn't have the emotional capacity (of course) to deal with all of the details. How much do I tell her, and when? How have other moms handled this? Thanks!

LuAnnH

When I was dx with bc my daughter was 12 and my youngest was 5. My husband and I sat all the kids down and told them that I was sick. I'm not sure if we said the word cancer but we did explain it was a serious illness and that the treatments to get me better could make me very sick. We kind of involved them in helping me stay healthy. Since we had 4 kids we went to walmart and let the kids each pick their color, we bought them 4 plastic tumblers in the color they chose as well as cereal bowls. We explained that if they drank after each other which they never seemed to care about it could spread germs and would make it easier for me to catch a cold and make my illness harder. They all took it pretty well, they helped me with housework and on chemo weeks they pampered me to no end. It actually turned out to be a good family experience.

LuAnn

atdec05

My daughter was also 9 when I was diagnosed. My son was 8. I told her when it was apparent I'd have chemo. I think I did say cancer, but not too much. Just that I was sick and I'd have to take some medicine for a while. She & my son did ask some questions about it which I tried to answer at their age level.

I got a wig because I felt it was important for the kids to see me as 'whole' as possible. When I was at home I'd wear a hat (luckily I live in the NE and it was winter), but when I started to get hot flashes due to chemopause, I'd take the hat off. Once she saw me without my hat and it hit her that I had lost my hair (my wig was very realistic-looking). She was sort of upset, but I reassured her that it would grow back soon. Then the next day when she waw me with my wig she said "Mom, your hair's come back!"

The one thing I didn't do, which was a mistake was to let their teachers know what was going on. I definitely didn't spend as much energy on the kids schoolwork, and at times it showed.

1 1/2 years out from treatment my children still refer to the time when I was sick, and I realize that it did affect them and it would have been good to let their teachers know what was going on.

take care, Anna

LuAnnH

funny you mention the wig Anna, my kids used to call me Stone Cold (he was a westler that was bald) when I didn't have my hair on. My son actually had a young girl in his class that was on chemo and all my kids knew her so I guess the weren't so frightened about the hair being gone. Kids are pretty resilent and if you are honest with them, you don't have to give them everything but enough so they don't panic. I would also recommend letting the school know. They watch to make sure your child is not withdrawing over the illness and they also help out with homework or anything your child might be having problems with.

LuAnn

BMD

My 5 year old son took the news very well and handled it all very well. He just seemed to take the whole thing in stride. When playmates ask why I don't have hair he just matter-of-factly tells them I had bc and the chemo made me lose my hair.

My 8 year old son had some really tough times. The hair loss was the worst for him. He thought it would be fun to shave my head but when they were done he cried for 45 minutes. (I didn't cry). It was so hot here this past year and with the hot flashes I only wore my wig once. I go bald at home all the time and wear scarves out.

I got bc in the summer and started chemo in Sept. Both of the boy's teachers were amazing. Both had known someone who had bc so they talked to the boys about that. There were also 2 other teachers at the school that had bc and both of them talked to my older son and to myself. Their dance and drama teacher even put my name on her shirt for the 3-Day BC Walk.

I was totally up front and honest with them from the get go. My husband, mother-in-law, church and some friends helped so much. They got the boys to and from school and all the other events they go to while I went through this. They never missed a beat.

I finished chemo Dec. 18. I am just starting to get some hair back and life as I knew it is starting to return. My 8 year old recently told me he admired me more than anyone. That is all I needed to hear.

Good luck with your treatment and your family. You can get through this. Stay on this web site and get all the information you need. These people have been my support group and I could not have done this without them.

fireba

Thanks for your comments and advice. I'm worried that this is going to be so difficult for my daughter who (like her dad) pushes everything deep, deep down inside. I would like her to be able to talk about it, ask questions, and know that it's okay to be a little scared. Of course, I'm frightened about my own treatment and what the future holds for me and my family. But I will beat this!

njsandy

Fireba,
Just as you said, you're going to beat this! That's the most important thing to show your daughter how strong and positive you are. We know we all have our insecurities about this dreadful disease and what the future holds,but unfortunately we can't let some people in our life see us down. If you have another woman if your life (sister/aunt/close friend), I find I can tell my sister all my worries and she's always there for me. I know she gets very upset with what I'm going through, but I know she's strong and can handle it better than my husband. He's also a man that keeps his emotions to himself.
I'm also sure if you search this board people in the past have given book suggestions to help you. My kids are 13 & 15 and I think they're taking everything ok. I'm stage 4, mets to lungs, but then I talk to my daughter's friend and she tells me my daughter crys a lot over it. It's very sad to see how this can affect everyone's lives so much. I'm been checking these boards out for a while and you'll find much support.
Just try to keep your spirits up
Take care,
Sandy

vmd

Sandy:

This is my fear as well. The kids look like they are handling it OK, but in private or with someone else, they allow their emotions to manifest themselves. On the other hand, I suppose it is better for them to show their emotions.

fireba

Just wanted to let you all know that we told my 9yo daughter about my bc today. We did use the word "cancer," knowing that she would eventually hear it, and that she was likely to be less frightened if we used the word and explained it to her first. I explained what the next steps were for me: surgery, then chemo and radiation. We talked about the likelihood that I will lose my hair, and she commented that I will look a lot like my 7mo son (who is still a baby baldie). The timing is good because it's a school holiday week this week, so I will have lots of time to spend with her and answer any more questions that come up before she goes back to school. I spoke with both her teacher and the school psychologist, so they are both ready to help her should the need arise later. She did really well with it - a little teary, but we told her that any and all emotions she feels are okay. I know that my family has several challenging months ahead, but I think we'll be even stronger and closer when all of this is finally over.

jbettie

fireba,

You and your family are in my prayers. My son was 10 when i was diagnosed last july. After I had bilateral lumpectomies and found out that both tumors were cancerous, I went to Barnes & Noble and found a book specifically written for kids that explained terms like cancer and chemotherapy. The book is called, " when someone you love has cancer." i sat him down and read the book with him and that seemed to take a lot of the fear out of it. I found out that he thought chemotherapy meant death, so I was able to clear up that misconception.
I finished up my chemo, rads and ooph/hyst surgery and will be starting back to work in a week. Still doing herceptin and he has been with me to get labs done but he doesn't like to go to the chemo suite so i find other things for him to do.
He is handling things pretty well and now i have to remind him that i DON'T have cancer. He sees me tired and thinks i am still sick. Just wait, you too will get to have that conversation with your children. God Bless!
Jules