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Helping the kids deal with mom/dad's diagnosis

jen2012
Posts: 1196
Joined: Aug 2012

AA's beautiful graduation post about her daugther inspired me to reach out to the parents here who have dealt with the kids' emotions and worries after a parent's diagnosis. 

My husband was diagnosed stage 4 in August 2012 and we have a 15 1/2 yr old daughter, a 13 yr old son and  a 20 month old son. 

The girl has this tough front that she puts on and to be honest I think she is a little angry with dad for getting sick.   She had a meltdown earlier this week and wanted to come home from school.   Said she had a horrible headache.  I brought her home - later she opened up a little bit.  She is just stressed.  Said she doesn't want to see her friends anymore, hates the kids at school and is so worried about her grades.   She's had a tough year and the grades have been up and down.  We went out Monday night and talked, laughed and spend time together.  She seemed better.     She's the typical teenage girl - moody and dramatic!

Our 13 yr old has had a tough year as he was diagnosed with type 1 diabetes in December, but he's been a real trooper in dealing with it.  He's really a good kid and very positive, but he worries me because he's so sensitive.  After my husband's surgery and then good report of no lymph nodes we decided that the cloud hanging over our home for the last several months is just not good and that we should take this news as cure and move forward.  Of course, neither of us are so stupid that we don't realize that there is a big chance that it could come back, but we are trying to convince ourselves that it will not.   It was hard to know how to answer the kids questions about the surgery and if they got all the cancer.  Our answer was that they got all that was there for now.     Hard to know what to say to them - why worry them about it coming back. Our thinking is they can worry about it if the time comes. I hate to give false hope, but didn't really know the best way to deal with it.

The baby - well he's just a baby.  He's happy and cute and very energetic!   It bothers me that he will most likely not have the same childhood the other had - worry free, fun, trips to disney, etc.

So, how much did you tell your kids?  How have they dealt with things?  Did they go for counseling?

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 446
Joined: May 2012

I can relate to the acting out. I have twin 15 year old boys. I was diagnosed stage IV April 2012. My boys were 14. Boys don't seem to talk as much. One of the twins acted as if nothing was wrong. The other one is angry at me. He won't let me near him. He will walk all the on the other side of the room to not walk right past me. He says he is not at all worried about me. He is very close to his father and will talk to him about nothing but won't talk to me. I had one big surgery last year in June and chemo follow up July-Dec and cried a lot and it didn't seem to effect him. I just don't know. When I ask what wrong he says nothing mom.

I also have a 30 year old daughter and 27 year old son. They are both married and were worried at first but after surgery they both think that's it. No more cancer. I hope and wish, I had 12/23 positive nodes. My whole family besides my husband think I am cured and if I say anything I am being negative. Hard to talk to anyone.

Kids.........

Sandy:)

jen2012
Posts: 1196
Joined: Aug 2012

Hi Sandy,  I think of you, Alex, AA, Vicki...and all of the other moms often and wonder how moms with cancer deal with the kids.  I know it's hard for the guys too, but moms are the caregivers typically and trying to take care of yourself and the kids must be so difficult. 

Your son (angry) sounds like my daughter.  She doesn't ask questions about doctor's appt and really does seem to be angry with him.  It's hard - I keep telling him to try to lay off the parenting a bit and let me deal with that and he can try to just talk to her.  It's not happening... 

Teens are funny - don't forgot the whole frontal lobe thing and try not to take it personally.  I'm sure he is scared to death and just doesn't know how to deal with it. 

It's really hard to talk to people - when I told people that there were no lymph nodes affected (knocked out by chemo) they say "oh thank God" like it's over and he's cured....I just don't get into it because like you said people think you are being negative.

So are you in just a wait and see period?   My husband had his surgery in April and is waiting for ileostomy reversal and I'm stressing about no maintenance chemo.  We just found out that he has a narrowing and they can't do the reversal now....so who knows when.  Could be 2 weeks or several months or ??   I didn't have the nerve to ask if it could mean non-reversible.     

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Jen,

When my 16 year old son found out I needed chemo, he was hysterical and beyond consoling.  He had a friend who's mom had died of breast cancer.  Apparently she didn't want the chemo and passed.  He kept thinking about his friend's mom and thinking I would forgo the chemo too.  I told him my cancer is different, they caught it early and after 6 months of chemo, I should be good.  I have 3 sessions left and of course no one but the man upstairs knows what'll happen to me but I just have to stay positive for him.  He's one of my FB friends so I have to be careful and not post negative things.  When I have my chemo weekends and just cry, I just make sure he doesn't see me.  Since he's a boy and a typical teenager, I think they keep their feelings to themselves.  So far he seems to be okay because I keep telling him I'm fine and it'll all work out.  I try to keep everything as normal as possible.  I still yell at him to make his bed, brush his teeth, etc. so I think by doing that he feels a sense of normalcy.  I know your kids are younger so it might be harder to explain it to them.  My prayers are with you and your family.

jen2012
Posts: 1196
Joined: Aug 2012

Hi CCB - keeping things normal is best.   Congrats on only 3 more sessions.  I hope that's it for you and you can just move on with life!  It's so scary for all of us, but wondering what goes through the kid's heads  - who knows.

Prayers for you too!  Thanks!

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

We have 6 kids (ages 15, 12, 10, 8, 7 and 5), so we have had a full range of responses.  I was diagnosed in June 2012, and we told the girls right away that dad was very sick and that we would need them to help mom out (mets everywhere, no surgical option, chemo for life).  I had to have surgery within 3 days of diagnosis due to a blockage, so we didn't have time to discuss that too much.  I was home on the 4th day after surgery, and stayed home for about 2 weeks and then started back to work at 1/2 time for 2 more weeks.  I then started chemo about 5 weeks after surgery, but was able to work full-time right through the chemo and am still doing that.  We have strived to make our home life as normal as possible for the kids, especially since I have been feeling well enough to do most things just like before.  All the kids know that dad has cancer, but I think they have been able to deal with it better because I don't look or act sick.  Not sure what will happen if/when things change and it becomes much more obvious that dad has something seriously wrong.  We plan to cross that bridge when we get to it.  We have been making sure to spend more time with the kids and to do some additional special things with them, but we don't want to go too far as they might start thinking something is wrong (kids are smart like that)...  My wife did home-school the boys this year, and that will probably continue next year while they are all still in elementary school.  I have only had one course of chemo so far (FOLFOX + avastin) and of course did the Germany therapies, so I still have irinotecan available and my tumor genetic testing indicated it should work for me.  Figure I might get a year out of irinotecan (maybe less, maybe more) so I plan to be around for a while longer.  I am trying to make sure I get as many things done this summer as possible with the family, as who knows what shape I will be in next summer.  However, all of that has to be coordinated around my job as we are a single income family (mine) which means we count on me working for income, insurance, life insurance, etc...  I will have to work as long as possible to keep us financially above water, but thankfully my company has been great so far.  As much as I would like to just say screw it and quit working and just spend all my time with my kids (especially this summer) it just isn't possible, so we will keep going like we have.  Of course, I am VERY worried about what will happen after I am gone.  If you weren't prepared before getting cancer (with health and life insurance) it is too late after diagnosis to get it. 

Tedd

Goldie1's picture
Goldie1
Posts: 250
Joined: Sep 2011

were told 2 years ago when their Dad was just diagnosed. But, they were older, 19 and 22 years old at the time.  We told them everything, we felt that they needed to know it all and they were mature enough to handle it.  They have both been very supportive and helpful.  Also, we told them to go on with their lives and enjoy every moment.  College, friends, going out, working...whatever they were doing, we did not want them to sit in fear and worry day in and out.  And, I think that has been good for all of us.  Even now, we let them know about every scan, result, and treatment.  

I think it might have been different if they were younger and I'm not sure if we would have told them every single detail.  

Wishing the best for all of you!

Ellen

Trubrit's picture
Trubrit
Posts: 1430
Joined: Jan 2013

My boys were 23 & 20 when I as diagnosed. 

I was still in shock when we sat our 22 year old down to tell him the news. I wanted to look positive and normal but I just started crying. My husband told him.  

My youngest I was most worried about. He is a sensitive lad, and so much like me that we have a special bond. I was calm enough to tell him. 

Who knows what goes trough their heads. I just can't tell. 

 Now I am living in the big city with friends, as my radiation treatment as with my chemo is a 350 miles ( about) drive, and radiation is every day for six weeks. I won't see my lads during this time.

Be as positive as you can. I've spent the last six months feeling like crap, with all the side effecs that go with the Oxaliplatin & 5 FU, but I always keep a smile on my face when the boys are here  teasing me.  

keep us updated we are free for you.

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

To know that your parent has a life threatening disease is devistating for a child who is of an age to understand.

Each reacts in their own way...denial...fear...acting out...whatever.

Check with your local American Cancer Society, oncologist, hospital and see if they have a support group which is age appropriate for the child.  It may help them to know that they are not the only one facing this.

While we all wonder when is the best time to tell this news to a child and how much to tell, it is important to be honest with them.  Let them know that you will answer any questions to the best of your ability.  They also need to be told that they can help...even if in small ways.

As a child, they understand they cannot fix this, and that adds to their emotional changes.  Let them know that you understand their feelings, but need their support.  Perhaps it would also help to get them involved in Relay for Life, if they are old enough.  So that they can see others who have had cancer surviving.

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2213
Joined: Oct 2011

For me, this was by far the hardest thing about having cancer.  We have had some pretty horrible moments when it came to handling our children, and their reaction to my being sick.  I have my 18 year old daughter, and I also have a 21 year old girl, and an almost 9 year old boy, so we have really run the gamut when it comes to reactions, understanding, degree of openess, and so on.

Each kid has been so different...my oldest is really interested in all things medical so she asked a lot of questions, researched this stuff, and of course scared the crap out of herself.  My middle kid never wanted any of the details, immersed herself in her friends, boys, and general running around. My youngest basically decided that I wasn't going to die...period.  He told my husband once that he was never worried because he knew cancer couldn't kill me (poor liitle guy-I missed his first day of kindergarten).

But in general our approach has been honesty, with some limits.  For example, we never told the kids just how bad my odds were (although again,, my oldest figured that out for herself).  But we did make it clear that my illness was very serious, and that it was going to take a lot of strength for all of us to get through it.  And when the girls asked me if I was going to die, the best I could say was that I had a good medical team and that my doctors were going to do their best to keep me alive.

At this point the kids consider me "cured", and I let them have that peace of mind for the time being.  It's probably not true, but I don't see how forcing the reality of cancer on them in this instance would be helpful.  If it comes back, we'll deal with it then.  I've been careful not to make any promises I can't keep (like saying I am definitely, 100% sure that I am cancer free...I just tell them that my long remission is a really good sign...I'm too superstitious to use the "c" word anyway!).

And we never did counseling, as my kids consider me their therapist, but I definitely think it can be a good thing.  Gilda's Club (if you have one in your area) has lots of great programs for kids.

PS  A worker we see on a regular basis at the grocery store said of my son (when he was about 6) that he had an "old soul in a young body". I truly think that is in part due to all he had to go through, between his sister's illness and mine.  And maybe that's not such a bad thing.  Our kids have to suffer so much.   I hope they all get some positive growth as a little compensation.

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