Topic: Anyone with the disease have small kids (under 12?)

I am a single parent battling this thing, and I swear what is going to defeat me is my 10 year old!  I am so exhausted from the chemo and the cancer and just not feeling good, and my beloved son insists on sucking the very essence out of me.  I know, he's being 10, but oh my GAWD......

Re: Anyone with the disease have small kids (under 12?)

Hi cdr,
If it's any consolation (which I'm sure it isn't), I don't have cc and my four-year-old is sucking the life out of me!! I can't even imagine how much worse YOUR situation is!
-Joyce

Re: Anyone with the disease have small kids (under 12?)

Dear "cdr" -- It's so difficult to even imagine you battling CC being alone and with the care of a 10 yr. old. besides. Is there any kind of a support group in your area that could help you by doing outside activities with your child to give you a break once in a while? A church group or something! Do you have family that can help? Maybe your family doctor can guide you. You are in my thoughts and prayers!!!   ~~  Jean

Re: Anyone with the disease have small kids (under 12?)

CDR, your post made me laugh, the last sentence! Oh bless, kids are bloody hard work at the best of times! Have you friends and family who can give you a break? Does your boy know what is going on? Has he any idea? I'm sure you aren't wanting to scare him, but at the same time I'm guessing he must understand that you are unwell? Is he playing up more than usual? It may be fear.
Wish I could help....but it would mean sticking him on a plane to UK!!
Hope you are OK!

Re: Anyone with the disease have small kids (under 12?)

thanks to all, and yes I have wonderful support.  It's the every day stuff, like, GETTING HIM UP IN THE MORNING!!!!  :-O  Yes, he does know what is going on, at least as much as a 10 year old can I guess.  He is one of the reasons I am having such a hard time dealing with the disease, not for the way he acts but for all the terrible things that have been done to him.  You see, I adopted him at age 5 from Guatemala after a pretty horrendous existence.  As a result of abuse, genetics, whatever he is bipolar, severe abandonment issues, ptsd, you name it, but despite it all he is one of the sweetest little boys you could ever meet.  So now I am grappling with God and why he would do something like this to a little boy? 
What we are trying to do is keep as normal as possible, I need it, he needs it.  He needs his mom to yell at him when he doesn't behave, I need to yell at him when he doesn't behave, we need life to be normal as long as we can. 
One of the really "aggravating" things about this disease is that I feel like Damacles' sword is dangling over my head, I want desperately to beat this thing but sometimes I wonder if I have the strength!  Of course, I used to say that even before I had cancer!

Re: Anyone with the disease have small kids (under 12?)

What a nightmare.
Not trying to be defeatist or anything, but have you made cunning plans for the boy, in the event that the unspeakable should happen?
Oh man, makes me so sad to read what people have to go through.
Lots of love to you CDR.

7 (edited by thecdr Fri, 21 Sep 2007 07:38:10)

Re: Anyone with the disease have small kids (under 12?)

Kate G wrote:

What a nightmare.
Not trying to be defeatist or anything, but have you made cunning plans for the boy, in the event that the unspeakable should happen?
Oh man, makes me so sad to read what people have to go through.
Lots of love to you CDR.

you know, I never considered myself religious or spiritual or whatever, but I am really starting to believe in signs and reasons for doing what we do.  I was living in San Francisco when I adopted Luis and one day while visiting my folks here in Ohio I just knew that I had to move back to be closer to family.  We moved back and I live literally around the corner from the house I grew up in and where my parents still are.  Our whole family are within 30 minutes of each other. 

When I did adopt I had to name a guardian for him as part of the process.  My sister graciously accepted.  She and her family had always planned on moving closer (they were an hour away) and 2 years ago they did, right down the street from me!  There was a reason for this.

so, when/if the unthinkable happens his entire life won't be completely disappear.  Same school, same neighborhood, same friends, surrounded by all the same people who love him.  How blessed am I?

He asked me if I was going to die and I couldn't lie to him, he's too smart.  But he knows that I will always be his mom and he will always be my son, and that we will always be in each other's hearts forever.  We pray every night and know that every day is a blessing.  Meanwhile we are doing as much as possible to "transition him" with my sister's family so he's not pulled from one and dropped into another.  In fact, through the graciousness of his godfather we are all (Luis, me, his godfather and my sister and her family) are going on a cruise in December!  We'll have 4 days to just have fun, relax and bond.  It will be very tough as time goes on, but I am secure in knowing that financially he is taken care of, and emotionally he will be loved and well cared for.  He doesn't want another mother, he just wants Aunt Peggy and Uncle Ray, because "you're my mom". 

So, when he gets his contract and pitches in his first major league game I will be in the great BIG "Skybox" instead of the one at the stadium.

Of course that doesn't mean that between now and then he won't continue to suck the very consciousness out of me, after all, he is 10 and it is his duty as a child to drive his mother crazy! :-)

Re: Anyone with the disease have small kids (under 12?)

My dear thecdr,

In another life, I think we could have been very good friends. You make me smile every time I read one of your posts. My children may all be grown and gone from home, but that doesn't mean I can't remember those days.  I love your usage of "Suck the life right out of me"!!!  As a young divorced mom of three, I had many days where all I wanted to do was get back in bed and pull the covers up over my head.  I can't imagine how I could have survived those days while managing a disease like this at the same time.  You are one courageous woman!

I am so sorry that you are having to go thru this and wish there was a miracle cure out there that would "fix" you and the others on this website who are fighting this disease.  If prayers help, then you are getting lots of help!!!

Take care of yourself. You are very important to many people, including yourself!

Sue

Today is a new day. Congratulations, you are already a survivor!

Re: Anyone with the disease have small kids (under 12?)

Thank you Sue, I have gotten so much from this board and the people on it.  We are all members of each other's "Cancer Posse"!

Re: Anyone with the disease have small kids (under 12?)

I have a 7 year old girl going on 14...   She blames everything bad on chemotherapy!  ; )

Re: Anyone with the disease have small kids (under 12?)

LaineyA wrote:

I have a 7 year old girl going on 14...   She blames everything bad on chemotherapy!  ; )

she's right!   lol

Re: Anyone with the disease have small kids (under 12?)

sounds like your 10 year old is angry with the disease!  Who can blame him-that's his aprent it si messing with!  It also sounds like you could use a break!  I understand- it is all on your plate right now.  Find a way to have your kid help you out.  He cna help make the meals that fight the cancer, soemthing!  Maybe if he feels less helpless, he will be calmer.

becky
blessed are those that are cracked,
for they let in the light!

Re: Anyone with the disease have small kids (under 12?)

Good to hear your cunning plans CDR. So glad you have all your family around, it must be a relief to know you can rely on them.
Hope you are doing OK TODAY!!
Much love x

Re: Anyone with the disease have small kids (under 12?)

hooray!!!  With the help of 8 separate alarms (the internet is a wonderful thing) he actually got up on time, had breakfast and a couple special mommy and me minutes!  What a difference it makes when I don't spend what little energy I have struggling to get him out of bed and off to school!  Today is a good day!  smile

Re: Anyone with the disease have small kids (under 12?)

I have two girls 9 and 5 years old.  I know my 5 year old doesn't understand what is happening to her Daddy, but she does ask all the really tough questions. I thought my 9 year old understood how sick her Daddy was, until last week when she asked him a question that started "Dad when your cancer is gone can we . . ."  I am trying to keep thier lives as normal as possible, and I don't want to scare them, but I think they need to know just how serious his cancer is.  If any one has any suggestions on how I can help them to better understand how sick their Daddy really is I would appreciate it. - Colleen

Re: Anyone with the disease have small kids (under 12?)

Colleen,

I was on a website that the foundation is looking at using to get information into the hands of oncology nurses about cholangio.

They have several things on the website that are very interesting and that we are looking into before we link them to the site.  However, one of the things I saw on the site that I thought was interesting is a book for children who are losing a mother or a father (different books) for each.

The link is www.ons.org

You go to the site and click on patient information.  Then go to the bottom of that page and click on "My book about cancer"

I've never seen the book myself, but it explains the intent. 

Stacie

Re: Anyone with the disease have small kids (under 12?)

Colleen wrote:

I have two girls 9 and 5 years old.  I know my 5 year old doesn't understand what is happening to her Daddy, but she does ask all the really tough questions. I thought my 9 year old understood how sick her Daddy was, until last week when she asked him a question that started "Dad when your cancer is gone can we . . ."  I am trying to keep thier lives as normal as possible, and I don't want to scare them, but I think they need to know just how serious his cancer is.  If any one has any suggestions on how I can help them to better understand how sick their Daddy really is I would appreciate it. - Colleen

Colleen, I think I am speaking from experience since my son is 10, only difference is that I am the one with the disease wink

What I have found is that kids will process this kind of "news" as their emotional and psychological maturity will allow.  At this point your daughters are doing just that.  LET THEM.  They know how serious his cancer is, that is, they know on the level of a 9 and 5 year old.  The statements such as "when your cancer is gone" is perfectly normal, think about it, don't you have friends and family that say pretty much the same thing?  you know, "you'll beat it", "praying for a miracle", etc etc.

What I have come away with in my experience with my son are the following:

*Children will process what they are able to and will give you signals when they are ready for more.  My son eventually asked me "Mom, are you going to die?"  He is much too smart to be fooled by the "we'll all die someday" BS, so I told him the truth, that the cancer I had was very bad and that I probably wouldn't be around as long as I want, but that the doctors and I were doing everything we could so that he and I could stay together.

*Children deserve the truth, but they don't need to be beaten up with it.  Ask yourself why it is so important they know how sick their father is at this moment.  Remember that denial is one of the stages of grief.  I know that one of the reasons I wanted to make sure my son knew was because school was starting in a couple of weeks and there was no way that this kind of news can be kept secret.  How would he react when the first adult hugged him and said how sorry they were about his mom.  As sad as it was for me to hear, I also knew that he "got it" when he asked the kids in his class to "pray for my Mom, she has a disease that's called cancer".  The fact that he is able to talk about it outside our home is a triumph in my book.

*Children need to know that they will be safe.  I think that right now your oldest daughter is going through the "If I close my eyes the bad monster will go away".  If she talks about what happens when Daddy doesn't have cancer any more, the cancer will go away.  My advice would be to let her do that, but inject a little reality in your answers.  Not "DON'T YOU GET IT, THE CANCER ISN'T GOING AWAY!!!!"  but "well, we hope that Daddy's cancer goes away but it might not.  What can we do now with Daddy that we don't have to wait?"
My son really needed to be reassured that I was going to be his Mom.  Without going into the gory details, my son  has severe abandonment issues and this has been one of the hardest things for me to grapple with.  His psychologist told me to remember that there is a difference between adandonment and loss.  I am not abandoning him, but he will be losing me.  But he also knows that I will ALWAYS be his mom and that he will ALWAYS be my son, and that we carry each other in our hearts forever.  We give thanks every day for the time we have together, In fact we say "Every day is a blessing"

Well, I have babbled and babbled, all with good intentions, but probably did a lousy job smile  BUT, I did find a couple of really good web sites that give basically the same advice I have tried to, but explained much better than I did:

These are pamphlets from an organization called CancerCare for Kids:

http://www.cancercare.org/pdf/booklets/ … ildren.pdf

http://www.cancercare.org/pdf/fact_shee … ren_en.pdf

By the way CancerCare is a great organization and offers counseling and other help:  1-800-813-HOPE (4673)

Another organization is Cancerbackup, they are based in the UK I believe.  Good article on how to talk to your kids about your cancer: 

http://www.cancerbackup.org.uk/Resource … yourcancer

also how to talk to them if you aren't going to recover:

http://www.cancerbackup.org.uk/Resource … gtorecover

Best of luck and keep me posted, we are all in this together!

Re: Anyone with the disease have small kids (under 12?)

CDR - Thanks for the great advice, I will look at the links you suggested.  I was also the child of a cancer patient, as my Dad was diagnosed with lung cancer when I was 18.  I remember being so confused and scared, and I just want to make sure my girls don't feel the same way.  Now 18 years later I am reliving the cancer nightmare all over again and it is no easier as an adult as it was as a child, infact I think it is harder, as I am more educated and understand fully how horrible cancer is.  I can't imagine how difficult this is for you, and my heart goes out to you and your son. Your right "We all are in this together." Colleen

Re: Anyone with the disease have small kids (under 12?)

Cdr and Colleen,
Mine is a different situation from both of yours, but my 4 year old daughter ADORED her grandmother and spent at least 2-3 days a week with her - my mother was more of a mother to her than I am, in many ways. She had some psychological issues, too, before this -- a "strong-willed" or "difficult" child with intense emotions and fears that she wouldn't share with anyone but my mother. I was so worried about her reaction to my mother's death, and I recommend reading everything you can about the child's age-appropriate needs, as I did. Especially the parts about being blunt and honest so they don't form their own ideas or misconstrue what you say. If you say they're in heaven, they may want to get to heaven to visit - my daughter wants to know if Grandma took her car when she left and she was trying to get directions to heaven so she could go there (going to carjack somebody, probably!) As I'm not religious, I stayed away from the imagery of angels and heaven because  it just confused her - they're so literal at this age. Though I do talk about her SPIRIT being around because she wanted to know what happens to the body (had to be honest, explain how the body stops working, there's no breathing, no moving, no thinking, then it's burned or buried) - and she still wanted to know well, where's GRANDMA, even if her body's gone? So she understood that there's more to us than just a body - I told her that all the love and beautiful things that were in Grandma are in her spirit in the air around us, protecting the ones she loved. This especially helps at night lately, since she's been having horrible nightmares.

My daughter was especially difficult in that she didn't want to discuss all this until recently, 8 months later, though obviously it's been on her mind and I started trying to discuss it with her way before my mother's death, just to prepare her. She's very stoic and her anxiety comes out in behavioral problems, so you have to constantly guess at what she's REALLY upset about. So it's a great sign, CDR, that your son is talking about it now so he can process it.  And I learned that all children have a kind of delayed reaction, since they can't focus on something for too long at one time, so my daughter was amazingly calm until 3 months after my mother's death, when we visiited my mother's friend who had taken over the care of my mother's dog. My daughter told me she was going to stay with my mother's friend and refused to leave. I realized she thought that wherever that dog was, my mother would be, so she was waiting for her. It's so  heartbreaking. Then she started acting up at school - uncontrollable tantrums and anger - the first kid in danger of being expelled from pre-school! I can relate to her, as I feel like having some tantrums, too. She's seeing a psychologist but some issues are ongoing.

Anyway, sorry for writing a book, but obviously this is something I've agonized over and both of you have been, too. I read all the books and got picture books explaining death - go to Amazon and do a search for death books and there are plenty for different ages and different religious bents . But we only read ONE book, once - because I realized it was just too painful for her to be confronted with her feelings about it, and maybe I'll try it again in a month or so. Also, be careful of saying that people die when they're old, because my daughter keeps asking how old different family members are - including me - and then asks if they're going to die soon.

Some say I have the consolation that my daughter won't remember my mother and this pain, but it kills me to think she won't remember their special relationship so I try to keep it alive - but gently. At least, CDR and Colleen, your children will have actual happy memories to console them later on in life. Something like this leaves scars on a child no matter what the age, but it also depends on the child's basic temperament - and my child is a real basket case sometimes! My friend's child is perfectly okay with the whole idea of death because she is a very logical and scientific-minded kid. My husband recently went on a business trip to China and my daughter completely regressed and brought up my mother constantly - because she was afraid Daddy wasn't going to come back.

Thanks if you got this far!!! I'll be quiet now!
-Joyce

Re: Anyone with the disease have small kids (under 12?)

oh please don't be quiet Joyce, your post, like all your others is chock full of wisdom that I use and will continue to use, thank you!

Barb