What now

Mack,

I'm sorry to see you back with this news so quickly.    I don't know what you would say to a 13 year old but remember that if she has resources to technology she will be able to find out how serious this is for herself. You don't want her googling in the school library and figuring this out by herself. Sounds like she already knows a lot from the questions she has asked you. There are some great books out there on how to discuss with your child that you have a life threatening health concern. I don't know the names of any but you might want to start another thread asking. 

Once you talk to her PLEASE tell her teachers at least part of what is going on in her life. Family members thought my nephew was handling his fathers cancer and the changes it brought. No one bothered to tell the school. He lost it one day with his band teacher when she got on him for being late to a practice. He had been late because he was helping his dad clean his feeding tube. It got nasty and Joel took that moment to disclose to his teacher and the entire band just what he thought about all of them. He had only told one friend and nobody had an idea of what was going on when he went off.

If they are able to remove the tumor you will hopefully then be at NED status again. What are they offering you? At stage 3 there are some trials when NED but I thought that placebo arms were also part of the trials or are you considering Interfuron. 

You have a lot on your plate right now with both your health, finances and coping with what to tell your daughter. 

Wishing you success with this next surgery,

Linda

Stage IV since 06

Mack,

I'm sorry to see you back with this news so quickly.    I don't know what you would say to a 13 year old but remember that if she has resources to technology she will be able to find out how serious this is for herself. You don't want her googling in the school library and figuring this out by herself. Sounds like she already knows a lot from the questions she has asked you. There are some great books out there on how to discuss with your child that you have a life threatening health concern. I don't know the names of any but you might want to start another thread asking. 

Once you talk to her PLEASE tell her teachers at least part of what is going on in her life. Family members thought my nephew was handling his fathers cancer and the changes it brought. No one bothered to tell the school. He lost it one day with his band teacher when she got on him for being late to a practice. He had been late because he was helping his dad clean his feeding tube. It got nasty and Joel took that moment to disclose to his teacher and the entire band just what he thought about all of them. He had only told one friend and nobody had an idea of what was going on when he went off.

If they are able to remove the tumor you will hopefully then be at NED status again. What are they offering you? At stage 3 there are some trials when NED but I thought that placebo arms were also part of the trials or are you considering Interfuron. 

You have a lot on your plate right now with both your health, finances and coping with what to tell your daughter. 

Wishing you success with this next surgery,

Linda

Stage IV since 06

Mack,

My kids were 13 and 11 when I went to stage IV and started all this drama a little more than a a year ago.  They can understand a lot more than we think.  They're boys, and our family is a bit of an odd case because I'm the stepparent, so they could be insulated from a lot of the worst of is by going to their mom's house when I was in the hospital, etc.  Is there a grandma or an aunt nearby who can help out with giving your daughter a break?

What I told my kids is that they were free to ask absoutely any question they wanted to – or no questions at all, if that's what they wanted.  They've pretty much chosen the see-no-evil approach and have asked very little.  It sounds like your daughter is more of the opposite, and it sounds like you're doing your best to support her.

I wish you the best.  This sucks enough without having to get our kids involved.

KatyWI

Mack,

My kids were 13 and 11 when I went to stage IV and started all this drama a little more than a a year ago.  They can understand a lot more than we think.  They're boys, and our family is a bit of an odd case because I'm the stepparent, so they could be insulated from a lot of the worst of is by going to their mom's house when I was in the hospital, etc.  Is there a grandma or an aunt nearby who can help out with giving your daughter a break?

What I told my kids is that they were free to ask absoutely any question they wanted to – or no questions at all, if that's what they wanted.  They've pretty much chosen the see-no-evil approach and have asked very little.  It sounds like your daughter is more of the opposite, and it sounds like you're doing your best to support her.

I wish you the best.  This sucks enough without having to get our kids involved.

KatyWI

Hi Mack

Linda is on the mark.  Be open and honest with your daughter.  Let her know when you need a hug and she'll need just as many.

Linda's adviser about talking with her teachers is really important.  It will help the teachers and staff assist your daughter as she copes.  I can't stress this enough, it's so important.

Jerry from Cape Cod

Hi Mack

Linda is on the mark.  Be open and honest with your daughter.  Let her know when you need a hug and she'll need just as many.

Linda's adviser about talking with her teachers is really important.  It will help the teachers and staff assist your daughter as she copes.  I can't stress this enough, it's so important.

Jerry from Cape Cod

Hi Mac,

My son was 16 and my daughter was 12 when I had my initial diagnosis. I was totally honest with them all along from the very beginning when I got that awful call from the doctor. When I progressed to stage IV and was given 6 to 9 months to live if I did not opt for the treatment, they heard all about it, but I knew I had to fight for them. They were 19 and 15 at that point. I had to inform him when he was in college 9 hours away. I don't know how he dealt with it. My daughter is a little more fragile and she had her grandmother to go to and have that shoulder to cry on. I am so glad that she had her at such a tender age.

My mom also was going through her own battle with cancer and I lost her as I was finishing a year and a half's worth of Biochemotherapy. So that was tough. We started having her go to a psychologist to talk to and I think that helped, but I know she was worried about losing me.

Here I am, I just celebrated my 50th birthday and what she said during my toast brought me to tears. She said "My mom was not even supposed to live to see 50." So sweet that she said that. My now 23 year old son said "My mom is the biggest badass I know." Sorry for the profanity, but it cracked me up!

My daughter even came to the hospital while I was undergoing treatment and she definitely saw me at my worst, but I would do this again in a hearbeat.

I am so sorry you are going through this. I hope you have family nearby and there is also another resource you could utilize, they used to be called the Wellness Community and now they are called The Cancer Support Community. It is totally free and she could go to one of the children's support groups. I hope you are near one, they are wonderful.

~Suzanne

Hi Mac,

My son was 16 and my daughter was 12 when I had my initial diagnosis. I was totally honest with them all along from the very beginning when I got that awful call from the doctor. When I progressed to stage IV and was given 6 to 9 months to live if I did not opt for the treatment, they heard all about it, but I knew I had to fight for them. They were 19 and 15 at that point. I had to inform him when he was in college 9 hours away. I don't know how he dealt with it. My daughter is a little more fragile and she had her grandmother to go to and have that shoulder to cry on. I am so glad that she had her at such a tender age.

My mom also was going through her own battle with cancer and I lost her as I was finishing a year and a half's worth of Biochemotherapy. So that was tough. We started having her go to a psychologist to talk to and I think that helped, but I know she was worried about losing me.

Here I am, I just celebrated my 50th birthday and what she said during my toast brought me to tears. She said "My mom was not even supposed to live to see 50." So sweet that she said that. My now 23 year old son said "My mom is the biggest badass I know." Sorry for the profanity, but it cracked me up!

My daughter even came to the hospital while I was undergoing treatment and she definitely saw me at my worst, but I would do this again in a hearbeat.

I am so sorry you are going through this. I hope you have family nearby and there is also another resource you could utilize, they used to be called the Wellness Community and now they are called The Cancer Support Community. It is totally free and she could go to one of the children's support groups. I hope you are near one, they are wonderful.

~Suzanne

Mack, I really found that the concerns about how best to address things with my child were the most distressing thing I have ever faced. Given that she was not quite 3 and my surgery was very “visual” though, I had no choice other than to address it somehow. I won’t go into detail about what worked for me, because there is a world of difference between a then 3 year old, and a 13 year old and most of what I had to do is largely irrelevant to your situation. Mostly I kept in mind what she was emotionally and cognitively capable of understanding, have been continually adjusting that as she has gotten older (going to be 6 in 3 months), and I pretty much let her take the lead as to what she wants to know.

I think much depends on personality too. I know Georgia likes to know exactly what to expect from medications and surgery, and that prevents imagination taking hold (which is usually worse than the reality, for kids). I don’t lie to her, but I take the time to give a carefully considered response even if that means saying “Mum’s going to answer that for you sweetheart, but I just need a little while to think about the best words to use”. As I said, this is a completely different developmental age from the one you’re dealing with, so it’s a whole different ball game, so to speak.

I agree wholeheartedly about keeping the school informed, and I’m a big proponent of open and honest (as long as it is appropriate information- i.e. not more than they can handle. It’s a balancing act) But I think it could be worth your while talking to a professional about and getting some insight, hints and tips about how to discuss this with your daughter. It sounds like it could be helpful for you all.

E.g. there is a uk organisation below, and I’m sure you’d find something similar in the US where you would get some help, support and advice. (Although a lot of it is about bereavement, there is MUCH about helping parents talk to their children about cancer and other illnesses)

http://www.winstonswish.org.uk/

My heart goes out to you all, and I hope you find a way to deal with this in the most comfortable way possible (which isn’t very comfortable at all, I know)

Mack, I really found that the concerns about how best to address things with my child were the most distressing thing I have ever faced. Given that she was not quite 3 and my surgery was very “visual” though, I had no choice other than to address it somehow. I won’t go into detail about what worked for me, because there is a world of difference between a then 3 year old, and a 13 year old and most of what I had to do is largely irrelevant to your situation. Mostly I kept in mind what she was emotionally and cognitively capable of understanding, have been continually adjusting that as she has gotten older (going to be 6 in 3 months), and I pretty much let her take the lead as to what she wants to know.

I think much depends on personality too. I know Georgia likes to know exactly what to expect from medications and surgery, and that prevents imagination taking hold (which is usually worse than the reality, for kids). I don’t lie to her, but I take the time to give a carefully considered response even if that means saying “Mum’s going to answer that for you sweetheart, but I just need a little while to think about the best words to use”. As I said, this is a completely different developmental age from the one you’re dealing with, so it’s a whole different ball game, so to speak.

I agree wholeheartedly about keeping the school informed, and I’m a big proponent of open and honest (as long as it is appropriate information- i.e. not more than they can handle. It’s a balancing act) But I think it could be worth your while talking to a professional about and getting some insight, hints and tips about how to discuss this with your daughter. It sounds like it could be helpful for you all.

E.g. there is a uk organisation below, and I’m sure you’d find something similar in the US where you would get some help, support and advice. (Although a lot of it is about bereavement, there is MUCH about helping parents talk to their children about cancer and other illnesses)

http://www.winstonswish.org.uk/

My heart goes out to you all, and I hope you find a way to deal with this in the most comfortable way possible (which isn’t very comfortable at all, I know)