How do you tell the kids?

[sezzy1983]

I agree with everything that has been said, honesty is def the best option for your children. Im in a similar situation to you 'husbandhasgbm' my husband had an oligoastrocytoma 10yrs ago and we have had chemo and radiation off and on but kept it at bay, not really knowing if it were serious or not?? In November of last year he needed a secondary surgery (first one initially when fist diagnosed in 2003) and they found that the oligo had shrunk but part of it had turned high grade, which they weren't sure how long it had been like that? I have an 8yr old step daughter and her mum and i are very close so we have spoken on many occasions about what we should be saying. We've told her that her dad has cancer and he's very sick, i know he has a gbm and i know the stats and how much time people usually have (we always hope we can be the ones to beat those odds) but how much should i go into it with her? Our neuoro oncologist has never ever given us a time frame, and i'm too afraid to ask! Can i ask, did you approach the subject with your specialist or vise versa? Because we've never been given a time frame, do i really need to tell her about his death when we don't even know, or should i approach that subject with her when he's in the 'final stages' god forbid that to happen anytime soon?

[husbandhasGBM]

Hi - no, when my husband's GBM was found (it is completely separate to his previous tumour) we were told by everyone that it was inoperable. Even the biopsy failed to get pathology, but every specialist we have seen or spoken to, including Charlie Teo's office, has confirmed the diagnosis and the fact it is inoperable. About 10 days after the tumour was found, the surgeon who did the biopsy asked me to come and see him and he outlined the prognosis in graphic detail to me, leaving me with no doubts about what was expected to happen. Just about all the medical staff we have seen, with the exception of the medical oncologist, have gone to lengths to ensure I know what the prognosis is. Do you have a nurse care coordinator where your husband is receiving treatment? If you do, talk to her/him. The NCC at the hospital where my husband had his radiation was, and continues to be, absolutely fantastic. Even though we are back home now and under the care of a different hospital, when it takes too long to find out something here I go back and ask her and she is always helpful. But beware, once you know, it makes it hard to hope. All the best.

[Mrs_Murt]

I have three children ranging from ages 21 - 4. I have been honest to them from the start with my two older girls and explained to my 4 year old at his level so he would understand. Only a month ago I had to tell them that I'm now not curable and will pass away. It was the hardest day to explain to my 4 year old that Mummy is going to be a star in the sky and he will have to go outside at night and give me a big wave. He is a very bright 4 year old. Even though times are tough it has helped my 13 year old to cope knowing that she knows the truth it has helped her with trust.

[husbandhasGBM]

Well, we've had more news today, which makes me glad I didn't tell the kids or my husband, who had a scan two weeks ago. I was told that the tumour had almost doubled in size, today they are saying that it hasn't, what they thought was growth was just swelling from the radiation.