How do you tell the kids?

[husbandhasGBM]

My husband was diagnosed with a GBM in december 2012. He has had stereotactic radiation treatment and chemo (temodal), which will continue for as long as he can tolerate it (and he tolerates it well thankfully). While he was getting treatment we were in sydney, living in a hotel on bondi beach (it turned out to be cheaper than the lodges, as well as much nicer), he was fine. We were up there over six weeks, coming home on the weekends, and really it was good time, we were together and had nothing else we had to do, we took the kids with us for two weeks but the rest of the time it was just us. He got progressively better with the treatment in terms of his symptoms, so after the first two weeks, he was pretty good (he has left sided weakness; he can still walk with a walking stick but can't use his arm at all). I have known the prognosis since he was in hospital before xmas, but he hasn't wanted to know, so he doesn't. He's not stupid, he knows it's serious, but he doesn't know the 4-6 months if the treatment doesn't work and 12-18 months if it does. His health care providers don't really believe me when I say this, but if he does know he has done an exceptional job of hiding it from me (which is not his usual MO anyway). This is not his first brain tumour, he an astrocytoma 11 years ago, had radiation, took six months off work and has been great ever since. He took the same approach with the first tumour, and he's pretty good at the ostrich approach so that's what he is doing this time. Sorry, that was all very long winded to get to my question, but given his lack of knowledge about the prognosis, it's hard to prepare the kids, and even though initially I thought the longer we can go keeping things as normal as possible, the better it would be for the kids, I now wonder if I've done too good a job of 'making it normal' that they aren't making the most of the time they have with him now. So, I'd be really interested to know how others have handled preparing children - ours are three girls, aged 10 to 14. thanks

[Minx]

Our situation was very different. We had to do all treatments with the girls around, this meant hearing us talk about the situation, we had to bring them in on what was happening. Throughout all his treatments we have been open with our girls 9, 13 and 15. Without giving them any time frames, we have learnt to value all our time together. There is still typical teenage tantrums. We did get Canteen involved early on for the older two. Can't recommend them enough. Last Sunday we had to explain that with all his treatments, surgeries and radiation the tumour is back and now inoperable (it was devasting for us all). My 15 year old has said she knows what is happening but also she dosen't want to know. Good luck Min

[jobeth]

Our children aren't children anymore but one is my husbands child all the same. At first he was heavily shielded but now, (we are in final stages) he is in boots an all and thank god he is, otherwise his guilt for not being around would have taken years to get over. Good luck with your decision. Personally I'd say be as open as possible, you are all going through this together and you will need each other as things get worse. Take care, Jo

[Melanie]

Be honest. Answer their only their questions (maybe don't pre-empt questions) Its a harsh reality, but it's reality. They have to know so they can say & do what they need to before the inevitable. My dad had prostate cancer when I was 15, I wasn't told anything until the very last minute when he went into surgery- if he had not survived, I don't think I would have coped. I needed to say things to him- I needed him to know I loved him. Now, my husband, has an astrocytoma located in the thalamus, my 4 year old knows dad is sick, and knows he has a lump in his head. And I have promised, as she gets older, and asks the questions, she will know the truth. Dying is a fact of life, and its so unfortunate that sometimes our little ones have to experience it so early in life. Your husband surviving 11 years after an astrocytoma brings me hope! I pray that I could keep my dear husband around for that long! Great big hugs for you

[husbandhasGBM]

PS - yes, looking around on this site has given me some hope about timeframes too Melanie. My husband's original tumour is still there, has never grown or shrunk, but has no blood supply. We thought that if something ever happened again it would be that one, but this tumour is in a completely different area, near the hypothalmus, and it's been suggested to us that it is radiation induced - mind you as many people have told us that it's not, that it's too early for radiation induced tumours. Have you read about George Plym - 11 or 12 brain tumours, including an astrocytoma in 1967. I'm torn between getting excited over this and getting depressed thinking that if he beat this one there'll just be another one round the corner - but as I said, the last almost 12 years have been great for us, right up till 10 December 2012, and I'll be forever grateful for that time and what we did with it (although we really weren't looking over our shoulder during it, it's harder when the symptoms are so in your face).

[husbandhasGBM]

Thanks - Min, Jobeth and Melanie - I suppose the hard thing for us is the precedent of being a bit blaise about the condition that has been us since the first tumour. We only had our oldest at the time, and she was around for everything, but I don't remember knowing how serious it was with the astrocytoma - when he was diagnosed this time a friend said to me that last time we were told 3-5 years and I really couldn't remember being told that (I'm still not convinced that I was told that, this friend's wife is a nurse and probably did the research). My husband had no symptoms with that tumour, no headaches, weakness, speech impediment (except minor slowness after the attempt to remove it which resolved really quickly). The symptoms that led us to check it out were minor 'vague spells' that he described as feeling similar to deja vu. When I gave his history when we went to hospital with this tumour and told them he had a grade 2/3 (and some characteristics of grade 4 that didn't show up in the pathology but observed when they were looking at it) astrocytoma the doctor laughed at me and said it couldn't have been, or he'd be dead now. We have been monitored by a neurosurgeon (not the one who did the op - which is another story) ever since, we were on yearly MRIs and we were so sure he was going to be fine, I didn't even go to the last appointment with him two years ago - again another story. Our NS always said to us that we'd know before he would, and that it might come back or it might not, that it might have been there his whole life and just started rubbing on something to cause the mild epilepsy. As I said, no symptoms, he did the radiation, wasn't offered chemo, took an extra three months off in which he worked around the house, and as soon as he got his licence back, which was six months to the day after the diagnosis he went back to work. He always told the kids that the scar on his head was because there was a crazy monkey in his head and when the doctor tried to take it out it bit him on the finger so he closed it up and just to hope that the monkey kept behaving himself. They know it's not a monkey (now - but they all believed this story till mid primary school, one even told it for news) and they know he is sick because they can see it. The weakness is obvious, his speech has changed, although it has also improved a little, he sleeps 12 hours minimum a day, and all he does is watch TV (when he only ever did that if it was raining and he couldn't be outside). We answer all the kids questions but they don't ask the difficult ones, and because he isn't talking about it or acknowledging the prognosis, we aren't talking about that. We're really open as a family, don't shield the kids from much at all, in fact there is just about no censorship in this house at all, just a lot of ostrichs :) He did see a counsellor when we were in sydney having treatment, and later told me that he wanted to talk to someone because he was worried about me if things don't go well, but that he felt like they would. He used the rest of the time to get recommendations for where to go for dinner, what to visit if we get to the UK, and a few other things that had nothing to do with the tumour. We need to talk about it more, me and him, and as a family, but there is a comfort from ignoring the elephant in the room that I only learnt during the first tumour, and almost wish I didn't know the truth this time.

[tropical]

I had to be really honest with our girls because I suddenly had to leave them at home and jump on a plane. I didn't retun for weeks! My husband worked in Brisbane and had been admitted to hospital after experiencing stroke like symptoms. I had to ensure they understood that even though they needed me - they were in years 11 & 12 - their father needed me more at that time, and I needed to be with him. The youngest one joined us shortly after while the oldest one chose to remain home. We also had a son living in Brisbane. We did lots and lots of crying as a family in those first few days. I'm glad I was so honest in the beginning, because the recent news of progression was met with acceptance of the inevitable as opposed to the abject shock we experienced in the early days.

[Jules2]

Honesty is important as is giving them the information in a way that is suited to their age. School psychologists can often be a good source and can help with bridge any gaps that might be occurring with school and home life and also offer support to the child. Plus they can liaise with teachers and keep them up to date and informed as to what is happening. It also helps the parent because it is one less thing they have to do and certainly it means you have some support happening. All my best. Julie

[husbandhasGBM]

Thanks Julie and Tropical - I suppose in a way I want to shield them from the truth, which if the doctors are right will come to a point where we won't be able to shield them from it. I want to protect them from the crushing sense of uselessness and fear of what is to come that I feel about the whole thing. Their teachers/schools know what is going on and have been great, so they are well supported there. We have an MRI tomorrow, if everything is okay we'll know by tomorrow night by email, otherwise we'll have to wait for the doctor to call as our next appointment isn't till 20 May. Either way it will no doubt give us a conversation starter. Thanks again.

[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?