What to tell kids?

[michele u]

I have been alittle down this week. I think it is because i have this big decision on the one more of Herceptin decision. Anyway, my 12 year old son has been asking some hard questions. The other night he was crying because he was thinking that he could not say Good Night to me if i died. It broke my heart. I was strong and told him "of course" i will be able to hear you! I just can't stand the thought of them without me. How do you all with small kids get through this?

[Michelle]

Michelle,
I tell my fifteen yr. old I'am a part of her, and I will always be with her.I don't know what your beliefs are, but I do believe we will all be together again someday. My daughter holds alot in, but I know she is terrified that I will leave her. I can't promise her anything, but I tell her my whole life is built around her and my two yr. old. When and if the time comes I will do my best to help them accept what life has dealt us. I know my husband loves our kids, and I have to take solace in the fact they will still have him. As mothers I think we fear leaving our children more than death itself. I know this proably doesn't help much , but this is a post that touches me so I had to reply.
Hugs,
Michelle

The above post I think is very valuable advice. I might add that life is very precious. People w/o cancer die also- everyday. So each day and each breathe we must treasure. All of us.

[lu ann]

Dear Michele U,

Annemarie is so right. We are all dieing everday, whether we have a terminal illness or not.

Each one of my daughters is dealing with this different from each other. My 21 year old daughter has matured and gotten much closer to me in the last 6 months. My 18 year old daughter is in denial. And my 14 year old daughter is acting out. It is very difficult for her, trying to go through normal teenage rebellion while having a sick mother.

It's so hard to imagine life without cancer. But, I keep telling myself that without cancer I would not have the same outlook on life.

Blessings to you all, Lu Ann.

[RhondaH]

When I was going through chemo and was REALLY sick, my 4 yo would ask me if I was going to die (this also came about because my father died the day before my 3rd chemo so he naturally put together sick and dying) and I found it's hard to explain death to a 4 yo. I think the hardest time for me is when Tony has a meltdown and begins crying and yelling "Mommie, don't leave me" (even if I'm just leaving the room). YES, the process of dying doesn't scare me, but leaving my son (4yo) and mother(73yo) (I'm a single mother and an only child, Gina and I spoke previously about having cancer and being a single mother and the different feelings THIS brings) scares the HELL out of me. I never was DEEPLY religious before cancer, but I feel GOD has blessed me with so much (my life, my son's life, mother, family friends, etc) that I thank him every day and while I know this life is only temporary, I pray to God every night thanking him every day and asking him that he keep me on earth long enough to help build my son's belief and faith in him so that one day we will all be together again.

Rhonda Hoffman

[CherylS]

This one touches me to the depths of my soul too. One comfort that comes from the pain we feel as mothers though, is that our love for our children is only a foretaste of how much God loves each of us and our children. Life on this earth is but a vapor for every one of us. I am not afraid of dying, like the rest of you, I am afraid of leaving my children, but even more afraid of causing them to watch me be sick. I would like to recommend a book to all of you, and it would be an excellent book for kids too if they are old enought to read it. My daughter is 13 and devouring it. It is called "Heaven" by Randy Alcorn. It is published by Tyndale. It is the most accurate, well researched and documented yet easy to read commentary on what the Bible says about life after this life I have ever seen. It's insights will comfort you with the assurance that if we believe in Jesus Christ we will indeed all be together again, but not only if, how and where and what it will be like. Taken straight from the scriptures this book is honest and has the potential to change your outlook drastically, and for younger children it will give you insights to comfort them with truth as well. This is a book I am giving to all of my children to read because I know that if I leave them first (my friend lost her 23 year old son last year in a motorcycle accident) it will give them understanding, confidence and comfort.

I am noticing more and more that this message board is becoming a place to come for friendship and comfort. Thank you all, and God Bless you.

[fourboysmom]

This is so hard. I have 4 boys ages 10,7,5,3. Each handles my illness in their own way. My 10 year old is pretty mature and gives me 'extra' hugs at night. My 7 year old thinks he can 'catch' cancer by drinking out of the same glass as me. My 5 year old informed me that his invisible friends mother just died, and my youngest son cries when he is away from me. Everyone says to stay positive, but looking into the eyes of these young children, and knowing the future is uncertain...well, that is the most difficult thing. I do the only thing I can, and that is to love them every single day. I wish you the best. Sincerely, Janet

[Becky]

Michelle


I went through this at the end of May when the study results were presented at ASCO. I was 3 1/2 months out of chemo and was in the group (6 months or less out of chemo to get a year of Herceptin).

I just sat them down (3 daughters ages 19, 16 and 13) and told them everything.

1. That the cancer had not come back.
2. What Herceptin was versus chemo and that I would not lose my hair etc
3. What Herceptin did and how good it was for me and my future prognosis.
4. That I had to take it a year
5. I always try to reiterate the fact that it will help me "if" there are any cancer cells left in my body.

My 16 year old always took the cancer the hardest. She DID NOT believe and told my 19 yr old so. However, my 19 yr old is an Environmental science major in college so she understands "monoclonal antibodies" and the science stuff pretty good - especially if I take the time to explain it. She set the record straight and told me about my middle girl's fear. So, I told the 3 of them the same thing I told them last summer - "I will never lie to you or keep anything from you. I will give it to you straight".

Like me, there is nothing wrong. This second year (of which I have primed the pump at home that the second year could happen) is still an adjuvant for you. Its so something WON'T happen not because something HAS happened.

In the long run, those of us who might never have a reocurrance will never know why we didn't. There is a small chance that some of us would have lived by just having the tumor and affected nodes removed. For others added radiation may have done it or just a couple of rounds of chemo instead of 8. Maybe it was dietary and exercise changes. Or maybe, its the Herceptin 2 doses, 20 doses, 50 doses or 100 doses. We just don't know so you gotta run the whole race and do what you have to do.

So, in a nutshell, what do you tell the kids. You tell them absolutely everything.

Love, Becky

[michele u]

Thanks everyone for replying. When i hear about the single moms i really feel for them. It's hard for me, but i have a very christian husband that will pick up the slack as to say if i have to go. This helps me alot through this process. I will say a extra prayer for the single moms!!!

[TriciaK]

This topic and all its theads have really touched my heart. Once again I am feeling what strong, courageous women you are, and that I really do love and pray for you. I agree that the best thing is to be totally honest and answer the questions as they come up. Sometimes they don't come up, though, since some children just can't voice their fears. Sometimes we have to just be aware and in tune. But we have to be honest, just as you've all said.I have mentioned before that when I was first diagnosed with BC 20 years ago, the same year my little sister died of it, I was devastated. I felt so much fear that I didn't want any of my grandchildren to know. I really didn't expect to live very long! I told my children, but told them not to tell their children. A short while later my two oldest grand daughters, both preteen, together confronted me for not wanting them to know. They said, "Grandma, how can we pray for you and watch over you if you won't tell us things? We need to know because we love you!" So I have been honest with them ever since. The only thing is that after 20 years they think I am invincible! After I was pronounced NED for the 3rd time in August, one of my granddaughters said "I knew you'd lick it again, Grandma! You need to write a book." Someday I know we will all have to face the inevitable--after all I am 75!--but I know I will have no fear and I think these wonderful kids and grandkids will be strong too. I have this saying on my bulletin board (I'm sure you've all heard a variation of it, but I like it): "Life is not a journey to the other side with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming "Wow, what a ride!" I believe all of us here are going to be able to say that. Thank you for all the inspiration you are to me. Hugs, Tricia

[RhondaH]

LUV you all!!!!

[Barbara H.]

I think it's better when our children are able to express their fears. My son was 11 when I was first diagnosed and 17 when it metastasized to my brain, lungs, and liver. He also had the fear that it was catching when I was younger. He has kept all his feelings to himself, and I have no idea how he really feels. At first I thought he was handling it, but now I know that it has had a signifcant impact on his life and that he is just in denial. I also have a 23 year old daughter with autism, and I worry about her future the most. My oldest married two months after my cancer returned, and she is starting her adult life. She is quite distraught with the situation, and found this website for me. I wish I had found it sooner.

I am not religious; see a little of the divine in nature, but am basically an agnostic. I therefore don't receive any solace from the idea of a hereafter.

I am still able to teach full time (third grade), and that helps to keep my mind off of my situation. Along with my family, my students mean the world to me, and I receive satisfaction knowing that I can make a difference in their lives.

My heart goes out to all of you, especially those of you who are raising your children alone. Many of you still find the time to encourage others on this site.

Best wishes,
Barbara H.

[lu ann]

Dear Barbara,

You sound like a wonderful mom and teacher. I have always thought of teachers as my childrens second mom. Some of you know more about our children then we do. Thankyou for being a teacher.

I will respect your right to your beliefs. All I will say is He is about a relationship not a religion. We are here if you should ever like to meet Him.

Blessings, Lu Ann.

[lu ann]

I will make a copy of your poem and frame it. My youngest daughter wrote me a poem which I will find and post for all of you to read. I cry ever time I read it. She went on a web sight and entered it to be copywritten. You should do the same with your poem.

Blessings, Lu Ann.

[margaret]

Hi Everyone,

I wanted to share my experience. When I was first diagnosed 4 years ago and my two daughters were 8 and 10 years old, I was really scared of not being here for them. I was stage 3b and given a poor prognosis. (but now since herceptin, I know that the statistics are not valid and I think my prognosis is (Excellent)) At the time, I imagined that I would just sit down at a computer and start writing everything I would want them to know. I was going to tell them everything I would need to tell them as they grew up. I was going to catagorize it and make a long list for each new year of their lives. ex. everything they need to know at 11, and 12, and 13, etc.
Then just a moment later, I had a beautiful thought. I realized that my children had always been my greatest teachers! They taught me what really matters in life. They reminded me how to live each day to the fullest. They showed me how to be filled with awe with the wonders of nature. I remember how long my 2yr old daughter would examine a rose bud. And the long walks with them as toddlers where they had to check out every leaf and object on the road.
Yes, I want to live a long life and indulge in every moment with them. I want to experience life with them as long as possible, but now I have this deep sense and awareness that they would be absolutely fine without me. I have complete faith in them and their God that guides them and know that they'll be fine. I also have that deep faith that God is guiding me too and I'm grateful for every new day I have and every new breath. I now it is a gift. I won't take it for granted.
Thanks for bringing up this important topic,
Margaret

Dear Michele,
I think that kids do suffer, but they will become stronger for this experience- as we do. I honestly beleive that cancer has been a gift in my life because prior to my diagnosis, I was not this spiritual. Everyday the Lord gives us is so precious and now I realize that.Now, I want to live my life for Him and to help as many of His children as possible. I struggled with such sad and sorrowful thoughts at the thought of leaving my two children.But after finally turning the whole situation over to God I realized two very important things that brought me great Peace. The first truth is- God loves our children even more than we do. After all, He is their Creator, Redeemer and Sanctifer. He can take better care of them than we can. This second thought came to me out of the blue one day after praying and crying for many days.When I realized it, it's like a light bulb went off in my head.-Here it is--- My priorities were out of order- I was giving the top spot in my life to my kids rather than God-worrying myself sick about "what if". Then I knew that God must have the top spot in my life, in my heart and in my soul. He is in COMPLETE control.He alone knows everything- all about each one of us. Everything is going so much smoother now and I live each day with His Joy knowing that He will take care of absolutely everything as long as we trust completely in Him.
Here's a poem I wrote- Hope you like it- God Bless- Cathy

"CROSSING OVER"

Please my dear child, don't weep for me.
I'm crossing over now, my spirit is free.
I watched the endless tears you cried
As I cross over to the other side.
If I could, I would dry all your tears as they flow,
The same way I dried them so long ago.
If only I could, I would hold you so tight
And kiss my child once more goodnight.
Your soul holds the secret I taught you my love,
Just follow the Word of our Father above.
Your lonely heart is breaking I know,
But you must say goodbye and then let me go.
There are loving arms waiting for me,
Familiar faces I already see.
There are friends and relations all cheering me on-
The choirs of Angels are singing their song.
But there are some who are missing-
They never learned
They reaped what they sowed
And it's torment they earned.
A Radiant Light shines- a splendor to see,
The voice of sweet Jesus is calling to me.
The trumpets are sounding to welcome me there,
The love that surrounds me is too much to bear.
As His arms enfold me- my soul is aflame-
I am finally home now, He calls me by name.
So, be happy my child and remember what's true
Till one day Heaven's gates open for you.
And that lovely day on my wings you will ride,
And I'll cross you over to the other side.

Catherine Walsh

[Lyn]

Hi all, it seems that the one thing we all agree on is that we are not scared of dieing, what terrifies us is how will the family survive without us, which means that some of us cannot die at peace. I had a teary with my 15 year old daughter today, apart from dealing with this disease I have my shoulder fractured in 2 places on top of the already collapsed humeral head on the same shoulder, the other shoulder and now my neck are in constant pain from the sling I have to wear for another 5 weeks, and then what, who knows, like my onc says, you have BC no one really cares about your shoulder, anyway I was trying to get dressed, being independent and of course I got stuck and in instant pain, she told me I should ask her before I try, all very well but she goes to school and I have to manage when she isn't around, so it was hot, my clothes were sticky, limited on what to wear with a sling, then my hair wouldn't do anything it should, I can't reach the top of my head, standing in front of the mirror I remembered what my 3 year old grandaughter had asked the night before, looking at a photo beside my bed, she said that is Ronnie, that is what she calls him, her grandad, but who is this, I had to say it is nanny before she got sick, now that hurts, because it doesn't seem that long ago that I did look like that. As usual my daughter who has been looking after me since she was just 8 says in her mother tone, it will he all right you will get better you haven't gone this far to give up, look at what you are doing for all of the others just by trying all of these drugs, she tells me that she is prepared for anything because she has seen and dealt with more than most adults, it doesn't make it any easier, her brothers 34 and 22 try not to think about it because it makes them too upset but they do, we just have to remember that life will go on without us, it will take a long time for the tears to stop, my dad passed away 2 years ago at 85 and I still get upset and I had him for a lot of years, but now I think of him as just living away or in the next room. He will never be forgotten, I have told this story before, when he was alive we discussed the theory of the saying "pennies from heaven" meaning that when we found one it was because an angel was thinking of us, but now there are no pennies so when he died we placed a lot of 5 cent pieces with him when he was buried, so when we come across a 5 cent piece, which is just about every day we remember him. At his funeral, my sister in law carried a hand bag she hadn't used for about 2 years and when she opened it there was a 5 cent piece, but not only that she dropped it as she showed us and it fell between the cracks in the floor of the verandah and when I went down to retrieve it, it was standing upright reflecting the sun, so you see there is the possibility of after life. There have been a lot of other unusual happenings, I was driving down the high way and my car felt so sluggish, finally a light came on the dash and when I pulled over it was the handbrake light, I had a look and a coin had lodged so the brake hadn't released, but when I looked at where I had pulled over, I was across from the cemetary where he is buried, I said thanks dad I will see you on the way back. Now I am easier with his death, his brother my uncle passed away 12 months after him with a rare melenoma, so when I find 10cents I know the two of them are together. When we visit my dad we place 5cent pieces on his head stone so he doesn't run out. It is a hard thing to deal with and no right answer, or at least I haven't found it yet either. My chemo nurses have told me how they have nursed patients in palliative care and the patients have known for quite some time that they would not be around and ask the nurses how they are going to tell their children, one patient was a sole parent, male with a 9 year old very young and the other she was very young with BC and a 9 year old also, she wouldn't even let the nurses help her feed herself, she didn't want to be a bother to anyone, I don't ask anymore how the patients that I know are doing because each time I do, it is bad news. I do believe that all of our paths are destined, and when it is our time we just hope that it happens when we are prepared for it, if ever of course. All I can say is just love them faults and all,we know we,cannot take their pain with us, like our treatments we keep praying that this one will do the job so we can get on and live, we are living with cancer, and not dieing of it. That phrase works for a little while, it is how much can we endure that is the question.


Love & Hugs Lyn

[lu ann]

The rainbow from above
gave me a shove
everthing is okay my dear
knowing its love was sincere
it taught me right from wrong
and how to sing its song
its my best friend
until the very very end
but the end is not at this time
you can't take her she's mine
I won't be ready when the end arrives
but knowing we put up a fight
we will be alright
even though our love was so true
it will leaving me feeling blue
but knowing I'll see you again
because mom, you were my best friend

[Daile]

The children thing is a biggy for me. It is the one thing that really cuts at me and at times can be overwhelming. I do wonder how my children are processing it all as I'm sure you all do too. My son was 7 yrs and my daughter was a few months of starting school (4.8 yrs). My son has become more aware in his ninth year and quite sensitive to the word cancer.

I recently had reconstruction surgery which went well in its self but the aftermath has been quite something else, a realisation of how my body has changed. I have watched their scared little faces look into mine and it eats me that I have brought this stress to them. It hasn't all been bad and sad. BC has brought to our family a bond, an ease far beyond what we had before. Things that seemed so important fade with the things that really are important brightly shining forth to the forefront - family, together time, joy, good friends, and our faith in GOD. No-longer do we worry what others might think.

My husband amazes me daily with his personnal growth, confidence and strength. My children to have grown and become more self-suffient which isn't a bad thing either. They are so much more capable of making decisions for themselves and their personnal needs.

Throughout this all it has been our children that have made this all the easier to cope. Its their little takes on how the world is, its the snuggling up on the couch together, its the holding my hand in public as people stare because I have no hair or accessories hanging out of me (drains). Its the big loud voice and the pointed finger at the person whoses starring "they are starring at you mummy!"

I feel lucky that I have the support of a husband and family to help me with this load. My heart goes out to all single parents and families that are far from each other. I am blessed to have two sets of grandparents within 20 minutes of us who are able to drop everything and look after the children when the need arises.

Every blessing to you all,


Daile

[kk1]

Those of you with young children might want to check out the Lauren's light foundation.

www.laurenslight.org or info@laurenslight.org

Their mission is to provide families where a parent of young children has been diagnosed with cancer, with resource and information. They can provide a phone and in person access to child life specialist to help you figure out how to help you children cope.

kk1