When to tell children your dying?

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Nik Colon

Re: When to tell children your dying?

Postby Nik Colon » Mon Sep 28, 2015 6:28 pm

My daughter knows plenty about death. She knows my bf died from an od and my brother suicide. I explained when my friend died (she was 6 then) that drugs/meds/addiction etc. I explained that it's in some ways like candy, that they liked it so much but like how candy and other things can make you get sick or upset stomach, and how meds can make you better, if you take too much it's really bad and you can die, not that they want to but they take too much and that's what can happen, obviously I have talked much more about as she has gotten older and about drugs and such. With my bro, I didn't tell her right away how until she brought it up. That is also hard to explain why someone would kill themself. That too I tried to explain that sometimes people have mental problems and if they don't get help it makes them feel like the only way is to do that and that it's a sickness in their brain, etc. I guess the other day she was asking my hub why we are here or why do we go here before heaven. As believers, my hub tried to explain like when we are happy or sad or like or dislike something, how would we know unless we felt both, so ultimately, how would we know happiness if we never felt sadness or pain. Bla bla bla. It's all hard to talk about or explain, we can only do our best to try to help them understand even if we don't have all the answers. I hope what I wrote made sense. I was trying to cut it down to fit it all in :)

CM35
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Re: When to tell children your dying?

Postby CM35 » Tue Sep 29, 2015 12:50 am

This is directed at Julie's question of how does one define "imminence" as it pertains to death... I guess in my case, we are leaving it as 'we will know its time, when we are there.' I would hope, at the least, I would have months to live when get there, but I suppose that's a chance we are taking. For us, it's kind of a consideration of the temperaments of our children, in addition to balancing the need to let them know what is happening before it happens versus burdening them unnecessarily. I don't know where that place is - as usual, with incurable cancer, it seems we are making things up as we go. One thing I am firm on, however, is that we are always honest with our children's questions. If either were to ask me if I will die from my cancer, I will not lie to them - most likely, yes, someday. I agree that children are far more intelligent and perceptive than we give them credit for. If my children are able to formulate such a question, it would stand to reason they are able to comprehend the answer, no matter how difficult it might be.

I think it helps that we have been open with what I go through with cancer. We have never made any attempt to hide the disease, the surgeries, the treatments. We don't sugar coat things, though we try to present them in a developmentally appropriate way. I think demystifying things as much as possible, will allow their questions to unfold in a natural way. I hope anyway.
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

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Maggie Nell
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Re: When to tell children your dying?

Postby Maggie Nell » Tue Sep 29, 2015 1:21 am

Val*pal wrote:
If you don't help prepare your dear daughter, she is going to have a much more difficult time adjusting. Also, by not discussing it, the silence makes "death" unspeakable and much more frightening than it is. We all die, and it is terrible that your daughter has to learn this at such a young age, but it is what it is. My dad had a life threatening illness when I was 6, and I think that because he and my mom were open about what was happening helped me deal with it. He actually managed to live another 9 years, but I didn't have to "imagine" what was happening. Kids' imaginations go crazy under stress. As little human beings, kids do their best to "make sense" of why something is happening. It's much better if that sense of understanding is based on fact.



My mother had a life-threatening illness and back in Australia of the 1960s & 1970s, the dominant philosophy was what a child doesn't know won't hurt them. I am
not sure if that was advice given to my parents by a psychologist but it was the most harm-filled approach as it promoted confusion and
compartmentalized everyone into their separate world of pain, where comfort was neither given or received.

Without facts, however unpalatable they may be, a child who is still developing needs to hear the facts to match with what they are noticing in the first place.
No one else can provide your children with the cues on how to live without you, the discussions they can recall in latter life; the void is dreadful.

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Last edited by Maggie Nell on Tue Sep 29, 2015 2:08 am, edited 1 time in total.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r.j hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Sorbitol is the Devil
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Nik Colon

Re: When to tell children your dying?

Postby Nik Colon » Tue Sep 29, 2015 1:38 am

I just want to clear up anything I said. As stated, I am currently NED, and am hoping/wishing to remain as such. So for me in my situation, I will NOT talk about the death aspect as of yet. If she comes to me wanting to know more or ask if I "could" die I would be honest, BUTT I want her to know my, and our, truth as it stands right now. I don't think with everything going on and my death MAY NEVER come from cancer, that we are aiming on curing it. She knows enough to know others do die from it, but until or if I actually GET to that point, I don't see any good putting it in her head that I might or could. She knows shit happens and can happen at any time, that's just life, but I don't need her thinking I'm GOING to die when we don't know and there is no end date. Yes, I will discuss it more if the time comes, but I don't think jumping the gun is a good idea either. Jmo, kids worry and stress more than we know and I know she thinks about it, but I don't want her to just be waiting for me to die either. What others do is up to them, but I think talking about it too early is not good also. Again, jmo

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Re: When to tell children your dying?

Postby wandalein » Tue Sep 29, 2015 12:54 pm

This question is a little close to my heart. When my oldest son was 6 years old (he is now 25) his cousin, best friend and the brother he didn't have was in a tragic accident (a house fire at the babysitters). He lived for 3 days and 3 nights in the hospital ICU. At the time, as a family we were all very distraught. Unfortunately for the first time in my life I took my mother's advice that she didn't want my son to see my nephew like that. She felt it would haunt him. In fact it was the very worse thing we could have ever done. At 6 he had seen people go to the hospital and come out better. When he knew his cousin was in the hospital he thought he was being fixed so he was totally unprepared when we returned from the hospital that last morning and told him his cousin had passed away. I think it shaped who he is. He became very introverted (an engineer). Looking back I wish we had included him in the process.

When my husband was diagnosed I insisted we tell our children. I remember even myself from being a child that the scariest things in my life were the things that adults whispered about and when you knew something was wrong but no-one told you. When my husband was diagnosed our youngest was 13. Telling them actually helped me. Their optimism was inspiring. They didn't miss a beat. They just assumed everything would turn out well. However, it also let us open up the discussion with them (although older than your child) about what we can control and what we can't. Also, that life is precious and it does spin on a dime.
Wife of Chris
March 2012 Stage 3 rectal cancer
May 2014 spread to liver
JUNE 2014 Liver resection 80% including gallbladder
June 2014 PET, CT, MRI
Oct. 2014 NED
Apr. 2015 NED
Jan. 2017 - still NED

canadiandaughter
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Re: When to tell children your dying?

Postby canadiandaughter » Tue Sep 29, 2015 6:02 pm

Wandallein, your story reminds me of something from my past. When my grandfather died, I was not quite 5. I wanted to go to his funeral but my mom, being upset from loosing her father couldnt handle having me there I am guessing, so she told me that funerals were not good places for kids and I would not like it. So in my mind, they were scary. I remember making excuses as a teenager as to why I couldnt go to any funerals. I was terrified!!! You have to be so careful with kids. They are smarter then you think and sometimes protecting them can make things so much worse. They might hear things and school and be scared to tell you, like your mom has cancer so she is going to die!! Kids say things that they hear their parents talking about and don't mean to hurt. I think your best bet would be to be honest with them as you go. Mom/Dad has cancer and the doctors and doing everything they can to help. They will understand better why you are not feeling good or maybe get grouchy. They might even feel better knowing why you don't feel good and enjoy helping to nurse you by bringing you drinks, snacks, blankets etc. Let them be part of the process. When the time comes that things are not working, you need to be honest with them so they can prepare themselves and maybe ask you any questions that they might have.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

pukalania
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Re: When to tell children your dying?

Postby pukalania » Fri Oct 02, 2015 5:30 am

Sweet Cherie
I'm so sorry :(.. This is the hardest thing... We just went through that couple of months ago ... Our daughter is 5 years old.. She always knew daddy is sick since she was new born .. so it's important to start with how much your daughter knows about your sickness, for us she knew he was sick but always hoped he will get better ... We decided to tell her together both of us once he got home with hospice while he was still able to understand and talk... It's fine line if you want to talk about it while in hospital or at home ... We hardly made it home while my hubby was still able to talk but we did ... We though if she had the chance to know he is going she can choose how to spend those last moments with no regrets later ... And she did on some days she came to cuddle on other she wanted to go play with her cousins elsewhere .. If you could get some recordable books with your voice for your daughter and look up a fingerprint pendant on etsy would be a fun memory for your little girl ... It helped ours.., but here is what we said I had to write it down first since it was so hard to talk:

Daddy is not going to get better as his body is no longer working well and he is very tired.

So with time daddy's heart will stop beating and he will stop breathing. We don't know when it may be soon or we may have some time .

Daddy would die and go to heaven to be with the Angels, and to help God and watch over us.

our job now is to keep Daddy free of pain and to spend time with him doing what he loves

None of this is your fault or mommy fault or daddy fault ... Sometimes no matter how hard we fight and the doctors fight our body cannot keep working. No one is in control of this and it's no ones fault

Daddy and mommy still love you very much and we will always be a family. We are a very strong family and we will be ok because we love each other very much.

Mommy will take care of you and will be always by your side and daddy will protect us from the stars.


Hope this helps ... Kids are truly amazing how they handle such a huge loss... You need to believe she will be ok

Lots of love your way
Xoxo
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

PainInTheAss
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Re: When to tell children your dying?

Postby PainInTheAss » Fri Oct 02, 2015 3:40 pm

Nik Colon wrote:My daughter knows plenty about death. She knows my bf died from an od and my brother suicide. I explained when my friend died (she was 6 then) that drugs/meds/addiction etc. I explained that it's in some ways like candy, that they liked it so much but like how candy and other things can make you get sick or upset stomach, and how meds can make you better, if you take too much it's really bad and you can die, not that they want to but they take too much and that's what can happen, obviously I have talked much more about as she has gotten older and about drugs and such. With my bro, I didn't tell her right away how until she brought it up. That is also hard to explain why someone would kill themself. That too I tried to explain that sometimes people have mental problems and if they don't get help it makes them feel like the only way is to do that and that it's a sickness in their brain, etc. I guess the other day she was asking my hub why we are here or why do we go here before heaven. As believers, my hub tried to explain like when we are happy or sad or like or dislike something, how would we know unless we felt both, so ultimately, how would we know happiness if we never felt sadness or pain. Bla bla bla. It's all hard to talk about or explain, we can only do our best to try to help them understand even if we don't have all the answers. I hope what I wrote made sense. I was trying to cut it down to fit it all in :)


Well, that's an important point. I guess first you have to know for sure you are dying. There is a big difference between protecting your kids from unnecessary worry about worst case scenarios and protecting them from knowing about an inevitable event. Being stage IV or having a recurrence alone doesn't necessarily mean you are "dying." I don't think the OP was talking about whether or not to tell children you have cancer. Maybe they already know that, but what if the patient comes to a point where they doubt any treatment option will actually be effective? I would have a hard time passing on that doubt. I would want my kids to keep hoping even if I was "losing faith." Because you never know. You could be wrong. It might work afterall. I'm reminded of a post of a stage IV patient who was told he only had so much time to live, quit his job, spent his savings on his bucket list and now it's been 10 years and he's still here and NED. And not sure what to do with his life now. I wouldn't want to do that to my kids, make them worry about something that ended up not happening afterall. I think you have to know for sure first rather than it just being "likely."
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Nik Colon

Re: When to tell children your dying?

Postby Nik Colon » Fri Oct 02, 2015 7:59 pm

Exactly pita, I would want to know that there was no hope til I said I may or will die.

Hanksy
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Re: When to tell children your dying?

Postby Hanksy » Tue Aug 02, 2016 11:36 am

My husband was given prognosis of 'at best 2-3 years' on his 5th round of chemo even though he was responding well. We have a 10 yr old and a 7 year old. So far we have told them he has cancer, where it is and what treatment he is having. We have decided to move back to England after living in Kansas, USA for the past 3 years as we feel the kids will need all the family around them when the time comes. They have asked 'Will daddy get better?' and we have both said 'No'. So we are trying to prepare them but without scaring the life out of them! It's a hard call to make. I kinda thought as his treatment comes to an end and no options can be given, maybe that might be the time to say for sure?
My Husband, Age 42 (Father to two children both < 10 years old)
DX: (RC)
Tumor Location: Lower rectum, and 7cm from anal verge.
Tumor type: Adenocarcinoma;
Tumor size (5 cm)
Tumor grade: G2: Moderately differentiated (intermediate grade)
Stage IVB
Positive lymph nodes: Several Pararectal
Mets: Innumerable Spots on Liver & 2 small spots on Lung
Baseline CEA 1833/6308/5558/latest 1620
KRAS Mutation
Chemotherapy (if any): 5FU & Avastin (11 treatments in as of 10/10/16)

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BeansMama
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Re: When to tell children your dying?

Postby BeansMama » Tue Aug 02, 2016 11:51 am

Kids often know more than we think they do. We have always been age appropriately honest with the kids. My Step Daughter is 14 and handled the truth well. My 9 year old knows I am sick, knows I have cancer, and that dying is a possibility but mom is going to fight as hard as she can to keep going. I feel bad that she has had to grow up pretty quickly these last few months, but on the other hand she is learning priceless lessons that she may not have learned had I not gotten sick. She is learning family pulls together and supports one another when a crisis hits. Oddly enough I think my diagnosis has made us a stronger family unit than we were before.

We are open with the kids and there to listen and discuss any time they need to. Bean (my 9 year old) had some real concerns about what would happen to her if I die, who would she live with etc. (my husband is not her bio father - bio is not involved). We reassured her that everything was in place and she would stay with Dad, she would still visit Grandma and Grandpa in the summers etc. She is a child that does better the more information you give her. It helps her feel prepared.

It all depends on the child really. We have also had Bean in counseling since my diagnosis and that has helped her to come to terms with it as well as give her an outside ear that isn't touched by my diagnosis.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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