Hello everyone,
Today I seek advice on how much, and what, do you tell the kids? My children are 4 & 5. So far I have not burdened them with ins and outs of what I have. They know I'm ill and need treatment.
Yesterday my daughter out of the blue said I don't want you to die and burst into tears and sobbed. I didn't know what to say. I don't want to lie. I said nothing and hugged her.
I didn't realize until yesterday how much it has effected them. I thought we had sheltered them until now. Where do I go from here?
Yours Vicki
Forums
10 posts
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How much, and what, do you tell your children?
I think you gave the correct response. Often with children we find ourselves wanting to give the big answer. Usually they are just looking for the short answer. And in this circumstance, I think they want the reassurance that you are still there for them. You did that. I think at 4 and 5 that's about all you could do. The rest would be to hard to comprehend. I'm sorry you have to go thru that at all.
Re: How much, and what, do you tell your children?
I have a 5 year old son. The life in our family so far has not been materially impacted by cancer. By this I mean that I make an extra effort to be active, in physical and mental shape, and maintain a good quality of life. I think I have succeeded, at least in my son's eyes, because he seems to be of the view that daddy can conquer mountains and compete on American ninja warrior.
My son knows that daddy was away in the hospital because he was sick, but at the time he was three and a half, and hardly had much of a conception of dying. I still think that to some extent he thinks that if you are dead, you get a rejuvenation shot and you resurrect (just as we have been doing while playing soldiers) or that souls don't die (as they have been teaching him in school).
Knowing my son, I have chosen not to discuss my cancer with him. If and when the time comes, he will know that daddy is sick and may not come back from the hospital, but that time is not here yet. Particularly, it may not be here for many years to come, and until an age when my son will have an entirely different depth of understanding of death. I absolutely see no reason to burden a child with such a sad, sad part of life.
Again, my situation is maybe a bit different from yours because he has not picked up on the fact that I have a terminal disease. If he would ask me a similar question as your kid did, probably I would do something similar and reassure him that daddy will always love him and that he will be OK.
Anyways, this is a heart breaking topic by any measure. Good luck to you.
My son knows that daddy was away in the hospital because he was sick, but at the time he was three and a half, and hardly had much of a conception of dying. I still think that to some extent he thinks that if you are dead, you get a rejuvenation shot and you resurrect (just as we have been doing while playing soldiers) or that souls don't die (as they have been teaching him in school).
Knowing my son, I have chosen not to discuss my cancer with him. If and when the time comes, he will know that daddy is sick and may not come back from the hospital, but that time is not here yet. Particularly, it may not be here for many years to come, and until an age when my son will have an entirely different depth of understanding of death. I absolutely see no reason to burden a child with such a sad, sad part of life.
Again, my situation is maybe a bit different from yours because he has not picked up on the fact that I have a terminal disease. If he would ask me a similar question as your kid did, probably I would do something similar and reassure him that daddy will always love him and that he will be OK.
Anyways, this is a heart breaking topic by any measure. Good luck to you.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: How much, and what, do you tell your children?
Hi Vicstir,
Telling your children is certainly a hard one. Understanding the type of myeloma you have and how it will impact you is also a hard one to answer. Someone with low risk myeloma may have a totally different "lifestyle" than one with high risk; as such, the impact on the respective families / children will / may be different.
We told our children (aged 6 & 10) and there were many factors that led to the decision to tell them. I lost my hair with the first treatment (bit of a give away), I was hospitalised on diagnosis (being linked up to IV machines with bags of stuff labelled cytotoxic - my 10 yr old could read), friends started a food roster (and sometimes would burst into tears when they saw me), I was incredibly weak after my first treatment, etc etc etc. So we told them.
Children notice things. You could always ask them what they think is happening.
Other people have posted similar questions, below is a link to one of them.
https://myelomabeacon.org/forum/talking-to-your-children-t1699.html
All the best,
Libby
Telling your children is certainly a hard one. Understanding the type of myeloma you have and how it will impact you is also a hard one to answer. Someone with low risk myeloma may have a totally different "lifestyle" than one with high risk; as such, the impact on the respective families / children will / may be different.
We told our children (aged 6 & 10) and there were many factors that led to the decision to tell them. I lost my hair with the first treatment (bit of a give away), I was hospitalised on diagnosis (being linked up to IV machines with bags of stuff labelled cytotoxic - my 10 yr old could read), friends started a food roster (and sometimes would burst into tears when they saw me), I was incredibly weak after my first treatment, etc etc etc. So we told them.
Children notice things. You could always ask them what they think is happening.
Other people have posted similar questions, below is a link to one of them.
https://myelomabeacon.org/forum/talking-to-your-children-t1699.html
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: How much, and what, do you tell your children?
Ivan, the hardest part of your message is that you refer to it as a terminal illness.
It is... Yet perhaps with current novel agents you will live to see even newer agents and perhaps a close-to-cure treatment (like diabetes), considering your young age.
Musn't we keep this kind of´hope?
It is... Yet perhaps with current novel agents you will live to see even newer agents and perhaps a close-to-cure treatment (like diabetes), considering your young age.
Musn't we keep this kind of´hope?
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Maro - Who do you know with myeloma?: My mom
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 63
Re: How much, and what, do you tell your children?
Definitely a difficult question.
For those with older children, I'll tell you what NOT to do. Do not explain to your daughter that you've been diagnosed with MGUS, while having lunch with her outside a cafe in Paris! I made that mistake while visiting Kim when she was studying abroad in 2009. At the time I didn't think MGUS was all that big of a deal because I'm always optimistic and didn't think it would progress to myeloma in me. I was wrong. I was also wrong in thinking that Kim would take the news calmly. But we've both moved on. Now it's a funny story for us. Sort of.
For those with older children, I'll tell you what NOT to do. Do not explain to your daughter that you've been diagnosed with MGUS, while having lunch with her outside a cafe in Paris! I made that mistake while visiting Kim when she was studying abroad in 2009. At the time I didn't think MGUS was all that big of a deal because I'm always optimistic and didn't think it would progress to myeloma in me. I was wrong. I was also wrong in thinking that Kim would take the news calmly. But we've both moved on. Now it's a funny story for us. Sort of.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How much, and what, do you tell your children?
Hi Vicki,
Sorry about your diagnosis and at your age with a young family makes me appreciate the few extra years I had before being diagnosed.
This is a difficult time and trying to decide what to tell children is so stressful. My children are teenagers and my partner and i found out about my multiple myeloma on a Friday. We expected tests at hospital over next couple of weeks and would tell them when we knew more. That all fell apart on the Tuesday when i was told to go to hospital (not the local, but 100 km [60 miles] away) and I needed to be there that night, not the next day, and to expect to stay for a week.
It was pretty stressful but we seem to be coping. Some days are better than others.
When my oldest boy was four his nanna was diagnosed with a serious heart condition requiring surgery. Her prognosis wasn't good and I was at a complete loss what to tell him. A friend suggested keeping things simple, sometimes we get sick we go to the doctor and they can make us better. Sometimes the doctors can' t make us all better but they can look after us to stop us getting more sick. Sometimes the doctors try really hard but when things are broken on the inside they can't fix things. I have explained to my children that with my multiple myeloma the doctors are going to make me really sick to kill the cancer, but then I will get better. My kids understand I will have this forever but children at 4 and 5 would probably have trouble understanding being 'sick' forever.
I don't know if this helps you and can't imagine how difficult this is for you, but wish you and your family well for the future.
Enjoy the sunshine!
Jen
Sorry about your diagnosis and at your age with a young family makes me appreciate the few extra years I had before being diagnosed.
This is a difficult time and trying to decide what to tell children is so stressful. My children are teenagers and my partner and i found out about my multiple myeloma on a Friday. We expected tests at hospital over next couple of weeks and would tell them when we knew more. That all fell apart on the Tuesday when i was told to go to hospital (not the local, but 100 km [60 miles] away) and I needed to be there that night, not the next day, and to expect to stay for a week.
It was pretty stressful but we seem to be coping. Some days are better than others.
When my oldest boy was four his nanna was diagnosed with a serious heart condition requiring surgery. Her prognosis wasn't good and I was at a complete loss what to tell him. A friend suggested keeping things simple, sometimes we get sick we go to the doctor and they can make us better. Sometimes the doctors can' t make us all better but they can look after us to stop us getting more sick. Sometimes the doctors try really hard but when things are broken on the inside they can't fix things. I have explained to my children that with my multiple myeloma the doctors are going to make me really sick to kill the cancer, but then I will get better. My kids understand I will have this forever but children at 4 and 5 would probably have trouble understanding being 'sick' forever.
I don't know if this helps you and can't imagine how difficult this is for you, but wish you and your family well for the future.
Enjoy the sunshine!
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: How much, and what, do you tell your children?
Your children can easily still be asking questions when they are 10 and 12 years old. I would tell them the truth, you are sick, but no one knows what lies in the future or how long that is.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How much, and what, do you tell your children?
Thank you, Cindy, Ivan Libby Jen Mike & Wayne,
I have stored all your advise for another day. Kids being kids yesterday has passed and it is not an issue today.
Of all the things we go through, when the kids are hurting that is singularly the hardest thing to contend with.(for me anyway) I have been guilty of being self obsorbed these past few months when really I should of given them a little bit more.
We all have an incling as to whats to come. I have made a promise to myself that I will put in the extra effort when needed. (that point hit home Ivan) I hope to make my children's childhood memorable for goods reasons not because mum's sick again! And somehow have a happy medium between too much information and too little. As my mum would say Keep It Simple Stupid. (more or less what Jen said).
Thanks Again
Vicki
I have stored all your advise for another day. Kids being kids yesterday has passed and it is not an issue today.
Of all the things we go through, when the kids are hurting that is singularly the hardest thing to contend with.(for me anyway) I have been guilty of being self obsorbed these past few months when really I should of given them a little bit more.
We all have an incling as to whats to come. I have made a promise to myself that I will put in the extra effort when needed. (that point hit home Ivan) I hope to make my children's childhood memorable for goods reasons not because mum's sick again! And somehow have a happy medium between too much information and too little. As my mum would say Keep It Simple Stupid. (more or less what Jen said).
Thanks Again
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: How much, and what, do you tell your children?
Its very hard, with my need to travel interstate for treatment my younger two (3 and 4) struggle with me being away but really don't understand that I am sick, even with the hair loss. my 4 year old is often tearful at school and is also very disruptive and difficult.
My 6 year old, on the other hand, is very aware of what is going on having seen three grandparents, one who lived with us for the last year of her life, pass away. Until recently he was asking me when my father, his last remaining grandparent, was going to die; I explained that people die when they are old and sick and that Grand Pa is just old, not sick. I am hoping that although he knows I am sick he is comfortable with the fact I am not old, but he doesn't want to talk about it. Sometimes all I can do is tell him I love him with a hug and a kiss.
My 6 year old, on the other hand, is very aware of what is going on having seen three grandparents, one who lived with us for the last year of her life, pass away. Until recently he was asking me when my father, his last remaining grandparent, was going to die; I explained that people die when they are old and sick and that Grand Pa is just old, not sick. I am hoping that although he knows I am sick he is comfortable with the fact I am not old, but he doesn't want to talk about it. Sometimes all I can do is tell him I love him with a hug and a kiss.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
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