Helping Children Cope w/ BC

Unknown

Hi, everyone:

I've posted before. To recap, I was diagnosed in Oct. 2003 with invasive ductal carcinoma. 1.2 cm. stage 3 very aggressive. Lumpectomy Nov. 2003. Just finished chemo [4 A/C, 4 Taxol]. I'm about to start rads.

I'm looking for suggestions on helping my 7 yr old daughter cope. In a parent/teacher conference last week, her teacher shared my daughter's daily journal with me. Many of her entries concern Mommy's illness. Her latest journal entry [which her teacher sent home to me] goes something like this... My daughter was given 3 wishes, and she wished in part: 1) to have medicines to make Mommy better because Mommy is sick; and 2) to have her family live a long time. Mommy is sick, and she wants Mommy to live a long time.

This journal entry broke my heart. I'm bald, and my daughter knows I'm really sick. Half the time, I can't make it to her swimming lessons, or her dancing school lessons. She also knows that I've been to the ER a few times because of reactions to the chemotherapy. We haven't told her any real details. I did get some books from the library recommended by ACS about discussing breast cancer with youngsters.

What else can I do to help her cope? Clearly, she's being affected by this. Anyone experienced this? Any suggestions? Thanks in advance.

Jaded

hummingbyrd

I can share with you what I did with my 8 and 11 year old from a Christian standpoint. I was diagnosed 6/00, my boys are now 12 and almost 15, they even went through a divorce the year after I was diagnosed. It was at that time the cancer metastasized to the bone. I was always very upfront and honest with my boys and made them quite comfortable with death. Although I always maintained the attitude I was NOT going to die.
When I found out about the first bone met I told my boys, "If and when I die do not be angry with God."
Well, my then 12 year old said, "Mom, it's not if, it's when 'cause we're all going to die."
I said, "Well OK, if I go before you, try not to miss me too much."
Maybe I taught them a little too well? LOL
Actually, no, that was one of my greatest moments. It is very uplifting to know your kids won't be just totally devastated if (when) you die. I know that may sound odd, but I want my boys to be that sure of the here and now and the beyond.
God bless.
hummingbyrd
email me if you want to tbyrd2@sbcglobal.net

martyzl

Hello Jaded...
It's tough. My daughters were 6.5 & 10 when I was diagnosed. The younger took it hardest. She kept it inside and it took alot of talking and explaining what was going on to get her opened up to any extent. The younger tried to refuse to go to school, clinging to me, she didn't want to leave me, she sobbed when she went to visit her father. It was heart-wrending!

My way of "handling" things with the girls (my mother's death due to cancer 6 yrs ago, my divorce from their father 5yrs ago, etc.), is to talk openly, honestly and *at a level they can understand* (it took me a while to understand how important this is!).
Death & divorce are certainly not fun topics... but the cancer I had, while terribly scary, could be thought of more as an adventure. We all talked about fears, hopes and hurts. We drew pictures together (which really helped the youngest) of the cancer being :insert bad guy/thing here: and how we could kill it or make it go away.
We also had as much fun as we could with it. When my hair started falling out, we shaved my head, the girls helped. They cut their hair short and they shaved my husband's hair off. We drew spirals to match my mood or outfit on my head.
When I could no longer walk them to school as the chemo weakened me, I sent special notes tucked into their lunches & pockets, telling them how much I love them and drew little pictures to cheer them up.
We talked about what we could learn from my having cancer. We talked about the fact that people do die. Everyone dies, every "body" dies... We talked about how much more important every day is together. We learned together.
I often reminded my girls that it was not their fault, that they had nothing to do with my cancer. Amazing some of the things they will think! Come to think of it, amazing some of the things we come up with too, isn't it?? *smiles*

As you start your rads, be sure to let her know ahead of time what she might expect. Try to keep her up on things before they happen so that they don't startle or scare her.
As with my hair falling out. The thought of it terrified my younger daughter. When it came time though, she handled it beautifully.

My youngest is now 8.5yrs old and finally becoming more secure. She can now go away without me and know that I will do my best to be here for her when she comes back.

A neighbor gave my older daughter a book called "Becky & the Worry Cup". She said it helped a bit but got more out of it AFTER I was through my chemo & the scariest bit was over!
Perhaps if you read & go over some age-appropriate books with your daughter, you can guide her along beside you...
Are there other chemo/radiation people who have children she could meet & eventually talk with?
I put the phone number for a support group for children of parents with cancer up by our phone. The girls never used it. *shrugs*
Just listen. Be aware that from her perspective, things look a LOT different!

Sorry to be so long winded but your plight hit hard with me...
We made it. You shall too!
If your daughter would like to have an email pen-pal with my 8yr old, please don't hesitate to write me here.
Same goes for you. *smiles*

All my best for you and your little girl!
You are nearly finished with the physical aspects of your treatment! Then on to the healing, inner and outer!

Be well Jaded! Please keep us updated on how you are doing!
Marty in Michigan

tlmac

Hi Jaded, I have no young children of my own but I teach handicapped children grades K-3. They have an especially hard time with substitute teachers because their daily routine and security is disrupted. I knew I'd be leaving in January and not return to teaching till the following school year. I talked to them about taking medicine that tastes bad, medicine that makes them sleepy or upsets their tummys. This they could relate to. I told them I'd be taking some really wild red medicine that would make all my hair fall out and we all laughed. I visited the school as often as I could during treatment so they watched me go through the stages of hair loss. I'm sure it's not the same as seeing Mommy go through it but I believe it helped them to have been prepared and to know that this was a temporary condition and that I'd be good as new as soon as I was finished taking the medicine. They knew I was really really sick but they also knew that in time I'd be getting better. Several parents told me their children wanted to discuss my illness with them but all were reassurred that the nasty medicine would actually make me better.
One of the young mothers in our building took her kindergartener to the cancer center to see where Mommy gets her medicine and to meet the doctors and nurses who were helping mommy get better. Enlist the help of teachers and other school personnel to reassure her when she's with them and let her discuss it when she needs to talk. Good luck.

inkblot

Hi Jaded:

The key is being honest with our kids at a level they can comprehend. They know well when something is going on and when no one shares and explains it to them, they're left to their imaginations. Which can be quite active at 7 years of age. Your daughter is still on that cusp of "reality/fantasy" stage of development. Pictorials are really helpful for kids of this age. Drawings, etc. which demonstrate the tumor and the cures are great and can take away some of the fears.

What Marty did re having fun with the anticipated baldness was excellent. These kinds of things reduce the fear of when our children will see us without hair and see us perhaps not well, for the first time.

My son had just turned 13 when I was diagnosed. Although older than your daughter, he still needed to know and understand what was going on at each step of the process toward healing. His Father always went to chemo with me and he asked if he could go too, to my 3rd treatment and of course, he was welcomed. He took everything in and this removed a lot of the mystery that was going on in his mind about how the treatments actually happened. Afterward, he said it was quite different from what he had expected, although we'd explained the details to him.

While my son was able to understand the scientific mechanics of cancer (science is one of his favorite subjects) he still needed to know what the chemo was doing to and for me and how it all happened, etc.. We talked frequently throughout my treatment. From the getgo, he needed to know if the cancer was anyplace else in my body and if I would be cured by the treatments.
We told him that likely I would be cured and be fine but that no one can say with certainty that this will be the case. We proceeded as if it would be. Although I was bald, etc. I think his seeing me feeling well a few days after each treatment, gardening, exercising and doing my routine things, made him feel more confident that I would be ok and although he seemed to stick close to home during the dx and early chemo, he relaxed and again began hanging more with his friends and doing the things they all love to do and had always done. Kids at all ages, I think, just need time to adjust and we can help them along in that process by providing honest info and sharing our good attitude. Maybe this also teaches them that they too can be "fighters", when life gets difficult and throws some ugly things at us?

Something else which helped him was the Counselor at his Middle School. A childhood cancer survivor and someone I'd known for many years, she was amazing and wonderfully helpful.

I actually think it's great that your daughter is writing about her feelings in the journal at school. The journals reflect the childrens' daily lives and so she's writing in there what she's thinking about and how she feels. She's expressing herself which is important but she also doesn't know that you ARE getting medicines to help you, so she's wishing for that. As long as she's continuing to write about other things in her journal as well, then it's a good outlet for her self expression. Talking to the psychologist or counselor at her school may help immensely. Kids internalize things very differently from adults and this person can give you a lot of insight and ideas, as well as begin meeting with your daughter in order to assess how she's doing, while staying in touch with you, all to help her handle it as well as possible.

Letting her know that climbing into bed (or onto the sofa) with you and cuddling, is welcomed. Maybe watch some of her favorite videos on tv together and help her with her homework, etc.. This way, she can still feel secure and close to you, while not being afraid of your "cancer" or worrying that medicines to help you aren't available. One of the most wonderful things about kids at your daughter's age is that they are so fully able to live in the moment and we could all take lessons from them on that!

I think death is probably the most difficult thing for any of us to talk about with our children and even moreso when they're very young.
Talk to a professional and perhaps focus less on death and dying unless your prognosis is poor and you feel that you need to try to prepare her. Even then, I'd want some expert help/advice in doing that. Otherwise, I'd focus on the positives and try to help her understand what she can about treatment, while making each day the best it can be. If she understands that the treatments which make you not feel well, will end, it can help her have a healthier perspective in the process and perhaps relax more.

Hoping that you'll find rads to be much easier than chemo and that you will find ways to share each day with your daughter that focuses on ordinary, wonderful and fun things and that she, like yourself, will come through this ok.

Love, light and laughter,
Ink

bullfrog13

Dear Jaded.
I can not even dream of what it would be like going thru this with small kids.
I have 5 kids and they were all teens when I was dx'd. That was hard enough to deal with.
For 5 different kids, all 5 dealt with it in 5 different ways.
So odd, the one that I expected the least out of became the one closest to me.

I wish you the best of luck and just keep talking and being as honest as you can be with the kids.

God Bless
jerilynfrog

Unknown

hummingbyrd said:

I can share with you what I did with my 8 and 11 year old from a Christian standpoint. I was diagnosed 6/00, my boys are now 12 and almost 15, they even went through a divorce the year after I was diagnosed. It was at that time the cancer metastasized to the bone. I was always very upfront and honest with my boys and made them quite comfortable with death. Although I always maintained the attitude I was NOT going to die.
When I found out about the first bone met I told my boys, "If and when I die do not be angry with God."
Well, my then 12 year old said, "Mom, it's not if, it's when 'cause we're all going to die."
I said, "Well OK, if I go before you, try not to miss me too much."
Maybe I taught them a little too well? LOL
Actually, no, that was one of my greatest moments. It is very uplifting to know your kids won't be just totally devastated if (when) you die. I know that may sound odd, but I want my boys to be that sure of the here and now and the beyond.
God bless.
hummingbyrd
email me if you want to tbyrd2@sbcglobal.net

Dear Hummingbird:

You surely have two well-adjusted boys! And what you must have gone through with a divorce right after diagnosis! I definitely don't want to die right now, but I do want my daughter to be able to move on if I do [unfortunately]. I guess I'm having some difficulty with the whole idea of death right now...I'll e-mail you...
Jaded

Unknown

martyzl said:

Hello Jaded...
It's tough. My daughters were 6.5 & 10 when I was diagnosed. The younger took it hardest. She kept it inside and it took alot of talking and explaining what was going on to get her opened up to any extent. The younger tried to refuse to go to school, clinging to me, she didn't want to leave me, she sobbed when she went to visit her father. It was heart-wrending!

My way of "handling" things with the girls (my mother's death due to cancer 6 yrs ago, my divorce from their father 5yrs ago, etc.), is to talk openly, honestly and *at a level they can understand* (it took me a while to understand how important this is!).
Death & divorce are certainly not fun topics... but the cancer I had, while terribly scary, could be thought of more as an adventure. We all talked about fears, hopes and hurts. We drew pictures together (which really helped the youngest) of the cancer being :insert bad guy/thing here: and how we could kill it or make it go away.
We also had as much fun as we could with it. When my hair started falling out, we shaved my head, the girls helped. They cut their hair short and they shaved my husband's hair off. We drew spirals to match my mood or outfit on my head.
When I could no longer walk them to school as the chemo weakened me, I sent special notes tucked into their lunches & pockets, telling them how much I love them and drew little pictures to cheer them up.
We talked about what we could learn from my having cancer. We talked about the fact that people do die. Everyone dies, every "body" dies... We talked about how much more important every day is together. We learned together.
I often reminded my girls that it was not their fault, that they had nothing to do with my cancer. Amazing some of the things they will think! Come to think of it, amazing some of the things we come up with too, isn't it?? *smiles*

As you start your rads, be sure to let her know ahead of time what she might expect. Try to keep her up on things before they happen so that they don't startle or scare her.
As with my hair falling out. The thought of it terrified my younger daughter. When it came time though, she handled it beautifully.

My youngest is now 8.5yrs old and finally becoming more secure. She can now go away without me and know that I will do my best to be here for her when she comes back.

A neighbor gave my older daughter a book called "Becky & the Worry Cup". She said it helped a bit but got more out of it AFTER I was through my chemo & the scariest bit was over!
Perhaps if you read & go over some age-appropriate books with your daughter, you can guide her along beside you...
Are there other chemo/radiation people who have children she could meet & eventually talk with?
I put the phone number for a support group for children of parents with cancer up by our phone. The girls never used it. *shrugs*
Just listen. Be aware that from her perspective, things look a LOT different!

Sorry to be so long winded but your plight hit hard with me...
We made it. You shall too!
If your daughter would like to have an email pen-pal with my 8yr old, please don't hesitate to write me here.
Same goes for you. *smiles*

All my best for you and your little girl!
You are nearly finished with the physical aspects of your treatment! Then on to the healing, inner and outer!

Be well Jaded! Please keep us updated on how you are doing!
Marty in Michigan

Dear martyzl:

Thanks for your response. You weren't long winded; I'm printing out all these responses so I can use them! I especially like the idea of tucking notes into the lunchbox and pockets, to cheer her up. I also like the idea of talking to my daughter about what we can learn from having cancer. And I also want her to let her know that I may be even more tired from the radiation than I already am. Thanks so much for sharing, martyzl! Continued good health to you and your family. I'm glad you made it through.

Jaded

Unknown

tlmac said:

Hi Jaded, I have no young children of my own but I teach handicapped children grades K-3. They have an especially hard time with substitute teachers because their daily routine and security is disrupted. I knew I'd be leaving in January and not return to teaching till the following school year. I talked to them about taking medicine that tastes bad, medicine that makes them sleepy or upsets their tummys. This they could relate to. I told them I'd be taking some really wild red medicine that would make all my hair fall out and we all laughed. I visited the school as often as I could during treatment so they watched me go through the stages of hair loss. I'm sure it's not the same as seeing Mommy go through it but I believe it helped them to have been prepared and to know that this was a temporary condition and that I'd be good as new as soon as I was finished taking the medicine. They knew I was really really sick but they also knew that in time I'd be getting better. Several parents told me their children wanted to discuss my illness with them but all were reassurred that the nasty medicine would actually make me better.
One of the young mothers in our building took her kindergartener to the cancer center to see where Mommy gets her medicine and to meet the doctors and nurses who were helping mommy get better. Enlist the help of teachers and other school personnel to reassure her when she's with them and let her discuss it when she needs to talk. Good luck.

Dear tlmac:

Thanks so much for the suggestions! I haven't talked to my daughter at length about all this, and maybe I should have. It's so good that you were able to go back and visit your students while you were in treatment. I've spoken with her teacher about my illness. My next step is to talk to the school psychologist and see if she can help in any way.

Jaded

Unknown

bullfrog13 said:

Dear Jaded.
I can not even dream of what it would be like going thru this with small kids.
I have 5 kids and they were all teens when I was dx'd. That was hard enough to deal with.
For 5 different kids, all 5 dealt with it in 5 different ways.
So odd, the one that I expected the least out of became the one closest to me.

I wish you the best of luck and just keep talking and being as honest as you can be with the kids.

God Bless
jerilynfrog

Dear bullfrog:

Thanks so much for responding. It is tough with a small child. But I will keep trying to make the best of each day with her and being as honest as possible. I always tell my daughter... "no matter what happens to me... I love you."

Jaded

Unknown

inkblot said:

Hi Jaded:

The key is being honest with our kids at a level they can comprehend. They know well when something is going on and when no one shares and explains it to them, they're left to their imaginations. Which can be quite active at 7 years of age. Your daughter is still on that cusp of "reality/fantasy" stage of development. Pictorials are really helpful for kids of this age. Drawings, etc. which demonstrate the tumor and the cures are great and can take away some of the fears.

What Marty did re having fun with the anticipated baldness was excellent. These kinds of things reduce the fear of when our children will see us without hair and see us perhaps not well, for the first time.

My son had just turned 13 when I was diagnosed. Although older than your daughter, he still needed to know and understand what was going on at each step of the process toward healing. His Father always went to chemo with me and he asked if he could go too, to my 3rd treatment and of course, he was welcomed. He took everything in and this removed a lot of the mystery that was going on in his mind about how the treatments actually happened. Afterward, he said it was quite different from what he had expected, although we'd explained the details to him.

While my son was able to understand the scientific mechanics of cancer (science is one of his favorite subjects) he still needed to know what the chemo was doing to and for me and how it all happened, etc.. We talked frequently throughout my treatment. From the getgo, he needed to know if the cancer was anyplace else in my body and if I would be cured by the treatments.
We told him that likely I would be cured and be fine but that no one can say with certainty that this will be the case. We proceeded as if it would be. Although I was bald, etc. I think his seeing me feeling well a few days after each treatment, gardening, exercising and doing my routine things, made him feel more confident that I would be ok and although he seemed to stick close to home during the dx and early chemo, he relaxed and again began hanging more with his friends and doing the things they all love to do and had always done. Kids at all ages, I think, just need time to adjust and we can help them along in that process by providing honest info and sharing our good attitude. Maybe this also teaches them that they too can be "fighters", when life gets difficult and throws some ugly things at us?

Something else which helped him was the Counselor at his Middle School. A childhood cancer survivor and someone I'd known for many years, she was amazing and wonderfully helpful.

I actually think it's great that your daughter is writing about her feelings in the journal at school. The journals reflect the childrens' daily lives and so she's writing in there what she's thinking about and how she feels. She's expressing herself which is important but she also doesn't know that you ARE getting medicines to help you, so she's wishing for that. As long as she's continuing to write about other things in her journal as well, then it's a good outlet for her self expression. Talking to the psychologist or counselor at her school may help immensely. Kids internalize things very differently from adults and this person can give you a lot of insight and ideas, as well as begin meeting with your daughter in order to assess how she's doing, while staying in touch with you, all to help her handle it as well as possible.

Letting her know that climbing into bed (or onto the sofa) with you and cuddling, is welcomed. Maybe watch some of her favorite videos on tv together and help her with her homework, etc.. This way, she can still feel secure and close to you, while not being afraid of your "cancer" or worrying that medicines to help you aren't available. One of the most wonderful things about kids at your daughter's age is that they are so fully able to live in the moment and we could all take lessons from them on that!

I think death is probably the most difficult thing for any of us to talk about with our children and even moreso when they're very young.
Talk to a professional and perhaps focus less on death and dying unless your prognosis is poor and you feel that you need to try to prepare her. Even then, I'd want some expert help/advice in doing that. Otherwise, I'd focus on the positives and try to help her understand what she can about treatment, while making each day the best it can be. If she understands that the treatments which make you not feel well, will end, it can help her have a healthier perspective in the process and perhaps relax more.

Hoping that you'll find rads to be much easier than chemo and that you will find ways to share each day with your daughter that focuses on ordinary, wonderful and fun things and that she, like yourself, will come through this ok.

Love, light and laughter,
Ink

Dear Inkblot:

Thanks so much for your many suggestions. I've printed out all of these wonderful responses and I will start using many of them as soon as possible. I will also seek out the school psychologist/counselor to see how s/he can help us. I'm hoping that I'll have an easier time with rads than I did during chemo. And I definitely need to block out more time for cuddling!! Thanks again for helping me out in what is a very difficult situation.

Jaded

mom62

Hi,

I myself was stage 3, had a modified radical masectomy, just finished 4 A/C and 4 Taxol. I have three kids 6,8,and 11. My 11 year old understands more than the other two. I was just honest and told them I was sick with cancer. I told them it was like a poisen in my system and I had to have very powerful drugs to make it go away. I told them the drugs would make me lose my hair, be very tired and maybe sick to my stomach. I've been lucky and have worked 30 hours a week through my treatments. It wasn't always easy but I felt keeping a normal routine would help the kids. If I'm tired and not feeling well I just tell them and they do more for themselves. I can see it effect my 11 year old at school though. His grades have slipped a little bit this past quarter. I think he worries alot about me. I find just being honest is the best policy.

martyzl

Hello again Jade! (dropped your "ed"- *grin*)

I've been thinking about you and your daughter... Be sure to keep her school journal so that she can look at it when she grows up. This is a really important time in her life too and to be able to look back on it and understand things from a different perspective could prove very valuable down the road... especially with you there to tell her your views on what happened. *smiles, wink*

Also, I kept my daughters' teachers abreast of what was going on at all times so that they were aware of what was going on "at the home front". This was really helpful for everyone.
Another thing, which is just a typical Marty thing to do *grin*, I went in to my daughters' classes while still on chemo, tired, puffy, yellow, bald- I briefly talked to the kids about what I was going through. Amazingly, only 3 kids out of 2 classes had never known anyone who had cancer... *sigh* But, I let them ask questions and get comfortable with me. This helped them understand my younger daughter's outbursts of tears as well.
The following school year, many of the kids see me with my big, dark, bushy chemo curls and make comments on how different I look and so on. It really stuck with them, in a good way, I like to think. *smiles*
Coming up on my 2nd yr anniv. of dx, my older daughter, this winter, had an assignment to write about her "mountain". Something really tough which she'd overcome in her life. Yes, she wrote about my breast cancer/chemo! Talk about a tear jerker!!! Yes, I kept it! *laughs*
Your daughter will be much more comfortable knowing what is going on and just getting extra snuggles and reassurance. I remember holding my girls and just shedding tears into their hair, wondering how long I would be around to do this... egad! Poor things were constantly cuddled and kissed. They were allowed as much affection and time as they wanted.
Well, you know, Jade, we could get hit by a Belgian Chocolate truck any day! *smiles* Just keep going, look for those glimmers of light and calm. Don't pack your bags yet, babe... you likely have quite a bit of living to be done here before it's time to pass off the earth! *grin*

Big hugs for you and your daughter!
Marty

jhope

I am sorry to hear your pain, it is so hard when our kids are literally our hearts. IN 12-03 My kids father died at 43 of brain cancer, they were 16, 20. That same month my mother was diagnosed with breast cancer, luckily stage 1. That following April (last year) I was diagnosed with medulllary, invavsive ductal, lymph node positive, etc. I took 12 chemos and radiation, 3 months out. I can't describe how it has been with my kids, they simply can't think, accept, or talk about my cancer. I understand, it is just very hard when it is consuming your life during treatment for me, how selfish is that. Sometimes guilt can really get you down. Please hang on and try to know that you will be there as much as you are physically able, all the hugs and kisses are all you can do emotionally. I know this probably didn't help you, sorry. Julia

Unknown

jhope said:

I am sorry to hear your pain, it is so hard when our kids are literally our hearts. IN 12-03 My kids father died at 43 of brain cancer, they were 16, 20. That same month my mother was diagnosed with breast cancer, luckily stage 1. That following April (last year) I was diagnosed with medulllary, invavsive ductal, lymph node positive, etc. I took 12 chemos and radiation, 3 months out. I can't describe how it has been with my kids, they simply can't think, accept, or talk about my cancer. I understand, it is just very hard when it is consuming your life during treatment for me, how selfish is that. Sometimes guilt can really get you down. Please hang on and try to know that you will be there as much as you are physically able, all the hugs and kisses are all you can do emotionally. I know this probably didn't help you, sorry. Julia

Dear jhope:

Thanks for replying. I'm so sorry to hear about your kids' father. How sad. And to have both you and your mother go through this horrible disease is so unfair. This whole thing is so unfair. I'm glad that you're done and thanks for understanding. It's tough to go through this with children. I will try to hang on as you say and I try to do as much as I'm physically able to do. I also try to take things one day at a time. Take care,Jaded.