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Our kids!!!


SandraL

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Through all of this fiasco...my kids have been my biggest worry. I have 2 children, 1 of each, 11 year old boy and 13 year old girl. And they have seen an uncle that they were very fond of die from colon cancer in his early 30's and they have seen their dad struggle with a life debilitating illness (a rare muscle disease that he fought for about 4 years, 2 of which he could barely walk). My husband fortunately has fully recovered from that.

Telling them about my initial diagnosis was the worst day of my life. It went fairly well but it obviously just broke my heart to have to tell them. During my first line treatment, they each dealt with it differently. My son was constantly worried and it just got worse...so bad that he didn't want to go to school for fear that he would come home and I would be dead. My daughter was of course upset but didn't seem to worry as much, outwardly anyways. I thought about getting them counseling but was playing a bit of wait and see. And then I was waiting for my results from 1st line treatment and I thought to myself that whatever they were I was just going to tell them I was cured. I probably really couldn't have but I was so glad to have been able to tell them that I was in the clear. My son was so relieved, and my daughter was like, oh that's great mom, I don't have to tell anybody you have cancer then. (I think her friends and their families were quite aware though as I have been very public re lung cancer advocacy and I was bald!). So I think somehow she was in a bit of denial and had been able to block it out from her daily life. So my kids have dealt with it quite differently. And then I thought, with my good results, no need for counselling. (And I had previous experience with a counsellor early on that did not help me at all...so I was very leary...she was telling me to go walk in a garden maze or something and I thought lady you have no idea who I am...and I am not a garden maze walker!)

And I went back to work, and they thought all was normal in their world again. Their normal crazy mother was back in business.

Now more recently, I have found out that I am no longer NED and I am needing to back away from work again. And it took me a few days to get over that and tell them. And I downplayed it big time. Just told them that they missed a spot and I was needing to go back and get that one cleaned up. They must have big time faith in their mom, as they said ok mom, and went about their business. I do not want my kids to live with constant worry. Leave the worrying to the adults.

But how the heck, and when the heck does one need to get more real with their kids about what is really going on. Any experience and advice from other parents would be greatly appreciated. Thanks in advance for your help.

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Sandra-

You and I have talked alot about how terrible this is for our kids and how unfair it is to them.

Don't know if I ever told you but Nick was the only one home with me the night I got my diagnosis. Long story short, the CAT scan doctor accidentally called my house with my results instead of the docs office. So he knew what was going on from the get-go. And he even stood by me and helped me tell my husband when he came home from on the road.

I guess all kids are different and of course Nick is a little older than your kids. We struggled in the beginning not knowing if we should tell him the truth about my prognosis or not. I wanted so bad to protect him from that constant worry that he would come home from school one day and I would be gone forever!! Then we decided that if we did not tell, he might be angry at my husband for a long time for not being honest with him. So I did tell him, but only that the doctors felt maybe a year but that they don't really know and that I promised him that I was going to try with everything in me to make his graduation. Told him I might not be able to do that, but I want so much to see him graduate from high school. Boy, was that a hard one to do!! We cried together. I have to tell you, for him, I am glad I told him. He has been really mature about it and has since thanked me for telling him and has made me promise that I will not keep secrets from him about my cancer.

Don't know if this helped you or not. Hope so. But then, you know I've got your back and you are going to be NED again real soon!!!!

Hugs - Patti

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Sandra,

I'm glad you posted this. I'm dealing with the same issue. My kids understand my diagnosis on a very basic level. They are younger than yours so didn't ask too many questions that I wasn't prepared to answer. I've never talked about the possibility of dying with them. My 7 year old asks me every once in awhile if I'm going to be a cancer survivor...I don't know where he heard this term, but I just tell him I am surviving every day and I'm fighting my hardest to make the cancer go away. He generally has a lot of anxiety. My 9 year old has been very quiet about the whole thing, although he has been extremely affectionate lately. They have seen my health improve greatly in the past 6 months and I think they worry less these days. I am figuring that for now, they need to focus on being kids and not worrying about their mom. If things go downhill for me, I figure I'll have time to talk to them more honestly...hopefully this will be many years down the road.

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Hi, Sandra.

My daughter is grown, and I told her immediately, including my poor prognosis (-13 mos. w/o treatment; and 13-36 if I completed most aggressive treatment). A week later (after more confirmation), I told my then 15 year old granddaughter and 11 year old grandson that I had lung cancer and that I would be fighting it with concurrent chemo and radiation. Both of them rallied around me and have been gentle and wonderful "caretakers" for their "Nana Cool" (my grandson's pronounciation of Carole ).

I did not tell them then that I was on a "time-buying" program so neither realized how poor my odds were at the time (01/07). In 09/07, however, my granddaughter chose lung cancer as a science project and almost immediately got the "big picture." We talked about it during her project and she seems to be okay with it now, but my grandson still doesn't realize I'm terminal; and we're just sticking with the "fighting it" story for now.

I have not lied to either of them, but have at all times tried to keep a positive spin on it. At some point, I realize I will have to tell them more but so long as I don't appear to be close to that point, I'm putting it off. :(

Sorry I couldn't be of more help.

Carole

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I hear you loud and clear, both as a mother and a teacher.

My son, now 22, was 7 with my first diagnosis. We really tried to hide him from the word cancer. Not the best of choices, but we were pretty much in shock at that time.

Second time he was 12. the second call I made after hearing the diagnosis was to his school counselor. Bless her heart, she really watched out for him through the 3 years in middle school. I had chemo that time and lost my hair. He saw me bald around the house all the time, and only one time asked me to put my hat on when outside.

Third diagnosis (lung cancer) he was 15 and in the 9th grade. Again, the guidance counselor became my best friend. She did constant check ups with him. I remember asking her point blank if he was going to see this cancer as the final one. She told me he sees me as a cancer survivor. I said to her "but what if?" and realized that everyone has a what if.

There are therapists out there for kids. I've seen some grief therapists do wonderful things for kids.

I also, after my third cancer, put myself in therapy, with a specialized counselor who only deals with womens' cancers. She helped me so much that I was able to put my fears aside and deal with mothering a teenager.

gail

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Hi Sandra,

Wow, this is a tough one. Our kids were 11, 8 and 4 when I was diagnosed. I agree that telliing our children that I had cancer was the most difficult thing that we've ever had to do, so far. We were pretty honest with the older two about what I had. We told them that it would be a tough fight, but that it could be done. When asked if I might die we were honest and toldl them that it was a possibility, but that we were going to fight with everything we had.

My daughter Samantha, the oldest, didn't say much of anthing. My son Joe threw himself on the floor and started sobbing, and praying. It was the worst moment of my life. Our little one, Alexandra, just knew that mommy was sick, but that was all she could understand at the time. She would often follow me around the house with a blanket, trying to get me to lay down and rest. It was the sweetest thing.

We have always told them the truth, through the ups and downs. When my cancer has progressed we tell them, but we leave out all the details. We'll just say that it's growing again and that my wonderful doctor already has another plan so we're moving on. We try and keep them focused on the positive, while not misleading them. I believe that if we are not honest, they will know. Kids seem to sense when they are being lied to, or when they're not being told something. It is a difficult thing to do, but to mislead them would be wrong. What if I die after telling them that everything is going to be okay? I think that would be devestating to them.

We are fortuante that my treatment leavies me feeling well, no nausea, hair loss or anything that disrupts family life. This makes it easy to forget about cancer, until it comes to scan time. Other than that we live a very normal life.

My son told me one of the greatest things recently. He actually apologiized to me because he felt bad because sometimes he forgets I have cancer. That was music to my ears. Ssometimes I forget I have cancer too, I just love those moments.

I hope this helps, Sandra. You need to follow your heart on this, iit will tell you what to do.

Good luck,

Tracy

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Sandra,

My children are 14, 8 and 2. I have and continue to tell the older two the truth about my disease. They know it is not good but they also know I am tough and a fighter and that I don't want to die and will do what I can to stay alive but sometimes it just isn't up to me, it is up to God. I am really glad that I have been honest because I don't want them to have any surprises. I came soo close to dying in January so now they truly understand the gravity of the situation. Like Gail, I rely heavily on the guidance counselors at school. They keep an eye on my kids. My 8 year old sees the school social worker once a week with three other boys that have a very ill parent. (unfortunately one lost his mother to leukemia last month).

The baby on the other hand does not understand what is going on and just knows that mommy is sick somehow. She knows I can't pick her up like daddy does and chase her up the stairs. She is very accomodating to what I cannot do and need her to help.

It is really hard to give you advice, only you will know what you think your children can handle.

Lilly

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My brothers and I are in our 40s. Each of us is handling the diagnoses in our own way. My oldest brother has his own health issues (needs a kidney transplant in the near future and one of my brothers will be his donor). My two other brothers and I chat about the situation. My brothers have kids. The oldest grandchild is 22 yrs. old. She knows pretty much everything that is going on. What is horrible is she is getting married next month. What is suppose to be one of the happiest times in her life is turning out to be one of the worst times of her life. My sister-in-law has suggested that she get some counseling to deal with my parents' cancer. My niece is very close to my parents. The other grandkids are younger... 13, 12, and 9. My 12-year old niece lost her maternal grandmother to pancreatic cancer in Dec. 2004. My 13 and 9 yr. old nieces lost their paternal grandfather to a one-car accident in August 2003. The 13 yr. old did not deal with her paternal grandfather's death very well. I can remember my mom and I sitting down and trying to explain what was happening to her Papa. I know that the younger grandkids will need to be told about things. But we will take it a step at a time.

Kristi

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I know I'm coming in on this a bit late but I still wanted to post.

My daughter was 6 when her grandmother was diagnosed, she was 8 when she died, and she was involved in the whole process...start to finish.

For her (and it has to be individualized to the child) it was LESS scary to understand it better than to let her imagination run wild. She went with me and her grandmother to a chemo infusion session...she went with us to a radiation session...Mom brought her SRS mesh mask home to show the grandkids...and when Mom died my daughter was with me by her side. I was always honest with my daughter about the struggle her grandmother was having to go through and that it may not turn out how we would like it to. But we also had the discussion that there was no reason to believe, either, that Grandma wouldn't make it to see 100...you just never know for sure.

It's so hard to know exactly how to deal with it with our children...but as best as you can, let them lead you. You know what they can handle and what they can't. Just remember that our children are amazingly adept at understanding more than we give them credit for.

Sending good thoughts your way!

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