I was surprised how badly my youngest son, 23 at the time, took it. (Pleasantly so, I must admit, he does love his old mom!) We had to spring it on him because I had been sent to Mayo and kept over night and we needed him to take care of the pets.

With that experience I would think very hard before I told a child younger than 16. There does come an age when you must tell them because they know something is going on and secrets can be very damaging in a family. But I agree, with your youngsters you have plenty of time to shield them from some realities of life.

Best to you,

Pat

Gary,

My kids were 5, 11 and 14 when I learned of my diagnosis.  I think most on this board will recognize there is no "right" solution for every person, every situation is unique.

Telling my kids was probably the hardest thing I've ever done.  I am by nature a private person, but for some reason it was very normal to share my diagnosis with them.  In my mind, there was really no way to conceal it considering one of my kids is older and would have figured it out anyway.   I wanted them to understand that uncertainty is a part of life and we would all work through it together.  Plus, I felt they needed to know having cancer does not mean a death sentence, which they would probably assume since they only hear the bad stuff on TV and radio about cancers.  And they needed to understand I might have certain limitations compared to my past "normal" lifestyle.

So in the end the decision is yours, pray about it, and be at peace with your decision.  Best wishes.

There is no Santa Claus???!!!

Gary, I think you should trust your own instincts.  I was in a tough position when I was diagnosed.  I was nursing a baby and a toddler.  I was swooped away for 5 days of testing in hospital.  My kids and I had never been apart.  But the head nurse allowed them on the oncology floor after taking their temps etc. (swine flu was going around).  It was the greatest kindness.  My son had just turned 3.  The main problem I had was that I had to explain why I could not nurse him any more.  I had to stop cold turkey.  Obviously, it was much easier with the baby.  I didn't have to explain anything to her.  We just told him that mommy's blood was sick and I have to take medicine to help it get better.  The medicine goes into mommy's milk, so we have to stop nursing.  I think going cold turkey off the boob was the worst of it for him (I was wondering when he was going to stop anyway).

Sometimes, I don't have anyone to watch the kids.  So, I have to take them with me to get my CBCs, some shots, and I have had to give myself shots at home.  Because of the way our life is structured, I have not been able to do this after they are in bed.  I could not hide them away when a nurse came a couple of times to show me how to give myself shots.  My son watched the first one, he then quietly went up to me and hugged me.  After that, he was disinterested.  I explained briefly that it was like when he got "shots" at the doctor.  That was all he needed.  When I take my "vitamins" each night, occasionally my son takes his too (in the form of M&Ms).  We make light of it.  He never seems to ask more than what I am doing at the moment.  I have to admit, being a mother and my kids' main caretaker, it is so hard, if not impossible to hide everything, but that is my situation.

I don't think there are any "rules" for this.  We know our kids.  You sound like you are kind and empathetic.  How could you not be the same for your children?  I think the fact that you are concerned reveals a lot.  I could only guess that you would never go anywhere that would permanently harm your children without seeking good direction (or at least giving it deep thought).  I am so sorry the two social workers you met were wrong.  They are supposed to be in a position to help guide you in a direction that you feel is right for you.  How confusing!  However, you were smart enough to know they were dingbats.  Sorry to be so blunt.  They were not very sensitive.  Says more about their own limitations.  Unfortunately, some of us have to sift through this kind of stuff.  Glad you knew better.

Thanks for bringing this topic up.  I really have not connected to too many people with CML and young children.  I think we are somewhat of a minority.  Here is to growing to a very old age where they can blame us for every ill in their lives and babysit for our grandkids!

P.S  Ironically, I grew up with a chronically ill mother (not cancer).  We could not afford a nurse full-time, so instead of committing her to a nursing home, my father and us kids took care of her.   It was a huge job physically and emotionally.  It was hard to watch her health decline.  In the end she had to have a feeding tube and didn't always know who I was.  However, I got through it.  Of all the troubles I have had, and the psychotherapy, it was my mother's illness that affected me the least.  And it was constantly in our face.  If the adults around them are sensitive and tend to their emotional needs, I think the kids will be

alright.  The experience did not destroy my life or cause me to become a terrible, disturbed and depressed person, (the troubles I have had were caused by other things--and I CAN blame my parents for some of them LOL).  And I want so badly to protect my children from suffering.  However, life is full of pain as it is joy.  And, I think it is usually the suffering that creates kind and empathetic people who are able to give something of value back to the world.  Just my thoughts. 

Hi garychris,

Lots of different opinions, but a general concensus to ignore anything you're told by a 'general cancer' advisor!

My kids are exactly the same age as yours and since my dx last year we've taken a very simple approach.  Daddy is sick.  Daddy goes to the hospital and takes these pills to make him better.  End of story. Daddy still plays with them, rough-and-tumbles and tickles them mercilessly.

As they get older I'm sure they will eventually start asking more questions and we'll answer them as honestly and non-scarily as we can, but at this point they don't need to have explained to them what cancer is, why this cancer is different, what the odds of Daddy doing well (excellent) or or otherwise are.

You need to make your own decision based on your own kids and your relationship with them.  You don't want to be living with a 'big secret', but you don't want your kids needlessly worried when the odds are you're going to be fine.  Don't rush into anything and do what you think is best.

Phil

garychris wrote:

"...The issue came up when I went to a local cancer support group.  I met with one of the social workers and one of the first things she brought up was when and how I was going to tell my kids.  I explained we weren't going to tell them and she became very passionate (almost militant) about it.  She said this was not something to hide from the children, that they already know something is wrong and by not telling them I am hurting them.  She says they are going to be afraid and have trouble trusting us (my wife and me) because everyone will know there is a big secret that no one is allowed to talk about.  She actually said it in a nice way, but that was the gist of what she was saying..."

Local cancer support groups have a lot invested in kids programs.  Of course they want you to tell the kids, if nobody told their kids they wouldn't have anything for all those people that work in the kid support programs to do, and a fairly significant loss of...a$$i$tance, for lack of a better word.

garychris wrote:

On one hand I understand what they are saying, but I am questioning whether there "one size fits all" approach to cancer is appropriate.  They weren't too familiar with CML; I spent a decent amount of time explaining my disease and treatment options to them instead of them explaining to me.

Having to spend a decent amount time explaining your treatment options to a Cancer Support Group should be a pretty good indicator that they will be of little or no help.  Cancer = ((Operation To Cut It Out) +( Lose Hair For A While) * (All Better Now)), that's their pretty basic equation.  You won't have it cut out, you won't lose your hair, and chances are you won't be all better now ever. You HAVE something, most of them HAD something.  It won't work.

Just my curmudgeonly experience, I hope more than anything that yours turns out different.

rct

This was a tough decision for my husband and I as well. I have 2 boys who are 6 and 9. We decided not to tell them. My oldest son has some anxiety and I could only imagine what this diagnosis would have done to him. There will come a day that I decide to tell them but that will be when they are older. Cancer is very scary for adults, let alone children. My mom was diagnosed with cervical cancer when I was in my teens and all I thought about was what if she died. It was very tough and luckily she is still here with me and healthy aside from rheumatoid arthritis. I as a diabetes nurse and work with many health professionals all of the time and one thing that has become very clear to me since being diagnosed in January is that you know what is best for you and your family. Professionals can give suggestions based on their experience but you know your children and your family better than anyone. You will make the right decision and trust it.