Looking for ideas or resources to help kids

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

When I was diagnosed Stage IV in 2013, my daughter was 4.  (She's now almost 7.)  One of the first things we did was have her start to see a counselor (with a specialty in early childhood).  Not every week, but every few weeks.  We eventually made a change in personnel, but she still sees a counselor every few weeks.  I use the "c" word and am honest about my situation.  E.g., "everybody dies, but I'm not going to die today", etc.  My theory on the counselor is that, at worst, it can't hurt and, at best, it provides an additional "in place"/routine support for my daughter.  This will be critically helpful if my situation ever takes a turn for the worse.

When I was diagnosed Stage IV in 2013, my daughter was 4.  (She's now almost 7.)  One of the first things we did was have her start to see a counselor (with a specialty in early childhood).  Not every week, but every few weeks.  We eventually made a change in personnel, but she still sees a counselor every few weeks.  I use the "c" word and am honest about my situation.  E.g., "everybody dies, but I'm not going to die today", etc.  My theory on the counselor is that, at worst, it can't hurt and, at best, it provides an additional "in place"/routine support for my daughter.  This will be critically helpful if my situation ever takes a turn for the worse.

When I was diagnosed Stage IV in 2013, my daughter was 4.  (She's now almost 7.)  One of the first things we did was have her start to see a counselor (with a specialty in early childhood).  Not every week, but every few weeks.  We eventually made a change in personnel, but she still sees a counselor every few weeks.  I use the "c" word and am honest about my situation.  E.g., "everybody dies, but I'm not going to die today", etc.  My theory on the counselor is that, at worst, it can't hurt and, at best, it provides an additional "in place"/routine support for my daughter.  This will be critically helpful if my situation ever takes a turn for the worse.

I would like to make a contribution from another perspective. My father died of cancer when I was 2 years old. My brothers were 8 and 6.

It was a long time ago and I know that 'good practice' has moved on but I think our experience is still relevant.

My father was ill for two years. We children, especially me, were considered 'too young' to be affected. Believe me, we were. Of course we did not know that. It was our normal.

Of the three of us, it turned out that I was the worst affected. I have a phobia of doctors and hospitals that I managed to work around and hide effectively for over 50 years. I would rather die than being admitted to hospital and I almost did.

My oldest brother, who was 8 when my father died, swears that he has no memories of my father at all, so I know he's been traumatised.

Goodness knows what my other brother remembers, we have never had a conversation that even touches on it.

So I would ask you, on behalf of your children, to find a really good child psychologist and follow his or her advice.

[I saw a pyschologist and then a psychiatrist starting February 2015. It hasn't changed who I am (which is, I now realise, pretty weird) but it has helped me manage the phobia.]

I would like to make a contribution from another perspective. My father died of cancer when I was 2 years old. My brothers were 8 and 6.

It was a long time ago and I know that 'good practice' has moved on but I think our experience is still relevant.

My father was ill for two years. We children, especially me, were considered 'too young' to be affected. Believe me, we were. Of course we did not know that. It was our normal.

Of the three of us, it turned out that I was the worst affected. I have a phobia of doctors and hospitals that I managed to work around and hide effectively for over 50 years. I would rather die than being admitted to hospital and I almost did.

My oldest brother, who was 8 when my father died, swears that he has no memories of my father at all, so I know he's been traumatised.

Goodness knows what my other brother remembers, we have never had a conversation that even touches on it.

So I would ask you, on behalf of your children, to find a really good child psychologist and follow his or her advice.

[I saw a pyschologist and then a psychiatrist starting February 2015. It hasn't changed who I am (which is, I now realise, pretty weird) but it has helped me manage the phobia.]

I would like to make a contribution from another perspective. My father died of cancer when I was 2 years old. My brothers were 8 and 6.

It was a long time ago and I know that 'good practice' has moved on but I think our experience is still relevant.

My father was ill for two years. We children, especially me, were considered 'too young' to be affected. Believe me, we were. Of course we did not know that. It was our normal.

Of the three of us, it turned out that I was the worst affected. I have a phobia of doctors and hospitals that I managed to work around and hide effectively for over 50 years. I would rather die than being admitted to hospital and I almost did.

My oldest brother, who was 8 when my father died, swears that he has no memories of my father at all, so I know he's been traumatised.

Goodness knows what my other brother remembers, we have never had a conversation that even touches on it.

So I would ask you, on behalf of your children, to find a really good child psychologist and follow his or her advice.

[I saw a pyschologist and then a psychiatrist starting February 2015. It hasn't changed who I am (which is, I now realise, pretty weird) but it has helped me manage the phobia.]

When I was first diagnosed Stage 3c in 2009, my kids were 9, 13 and 16. We found out pretty quickly that they knew something was going on. Unless we talked about it with them, they made it more scary in their minds. So, we've always been honest with them, telling them as much as we felt they could handle and understand (depending on age). I guess one thing I could add to what others have mentioned, is that I gave their teachers a heads up in case they noticed something in the child's behavior was off. I've also felt that it was good to have additional adults in their lives if they needed someone to talk to.

Gwen

When I was first diagnosed Stage 3c in 2009, my kids were 9, 13 and 16. We found out pretty quickly that they knew something was going on. Unless we talked about it with them, they made it more scary in their minds. So, we've always been honest with them, telling them as much as we felt they could handle and understand (depending on age). I guess one thing I could add to what others have mentioned, is that I gave their teachers a heads up in case they noticed something in the child's behavior was off. I've also felt that it was good to have additional adults in their lives if they needed someone to talk to.

Gwen

When I was first diagnosed Stage 3c in 2009, my kids were 9, 13 and 16. We found out pretty quickly that they knew something was going on. Unless we talked about it with them, they made it more scary in their minds. So, we've always been honest with them, telling them as much as we felt they could handle and understand (depending on age). I guess one thing I could add to what others have mentioned, is that I gave their teachers a heads up in case they noticed something in the child's behavior was off. I've also felt that it was good to have additional adults in their lives if they needed someone to talk to.

Gwen

While I haven't personally been there, I know The American Cancer Society has many guides on talking to children about cancer that might be useful to check out: http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/

This is another pretty comrehensive guide from the Unversity of Michigan that has everything from articles to children books: http://www.med.umich.edu/cancer/files/talking-w-kids-about-a-loved-ones-cancer-information-guide.pdf

Gilda's Club and Camp Kasem are two other organizations that help families and children coping with a parent's diagnosis.

On their website here, the Melanoma Research Foundation does list support organizations, so it may be worth reaching out to see what type of support exists in your area: http://www.melanoma.org/understand-melanoma/resource-library/helpful-links

Wishing you all the best.

-MW

While I haven't personally been there, I know The American Cancer Society has many guides on talking to children about cancer that might be useful to check out: http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/

This is another pretty comrehensive guide from the Unversity of Michigan that has everything from articles to children books: http://www.med.umich.edu/cancer/files/talking-w-kids-about-a-loved-ones-cancer-information-guide.pdf

Gilda's Club and Camp Kasem are two other organizations that help families and children coping with a parent's diagnosis.

On their website here, the Melanoma Research Foundation does list support organizations, so it may be worth reaching out to see what type of support exists in your area: http://www.melanoma.org/understand-melanoma/resource-library/helpful-links

Wishing you all the best.

-MW

While I haven't personally been there, I know The American Cancer Society has many guides on talking to children about cancer that might be useful to check out: http://www.cancer.org/treatment/childrenandcancer/helpingchildrenwhenafamilymemberhascancer/

This is another pretty comrehensive guide from the Unversity of Michigan that has everything from articles to children books: http://www.med.umich.edu/cancer/files/talking-w-kids-about-a-loved-ones-cancer-information-guide.pdf

Gilda's Club and Camp Kasem are two other organizations that help families and children coping with a parent's diagnosis.

On their website here, the Melanoma Research Foundation does list support organizations, so it may be worth reaching out to see what type of support exists in your area: http://www.melanoma.org/understand-melanoma/resource-library/helpful-links

Wishing you all the best.

-MW