Glioblastoma Multiformae child
Discussion
I think it only fair to point out beforehand it might be upsetting for some to read this post..
I haven't posted on PH for a while as I have been rather distracted.
17 months ago my little boy was diagnosed with a brain tumour - Glioblastoma Multiformae.
Without going into details his treatment included debulking surgery, 2 months in hospital, 6 weeks of radiotherapy everyday, a peg (a tube to deliver food directly into his stomach), a second round of radiotherapy six months later and a massive drugs regime throughout.
He was a tough little guy who gave everything 110%
From being unable to stand up, he learnt how to walk and ride his bike again, he managed to attend school for a year and we were so proud when not only did he enter his sports day he didn't come last in the running race!!
Unfortunately his condition worsened and Yesterday he died aged 5.
I feel numb, upset, angry, hurt,
I miss him so much
Well f
k you cancer fk you!
I haven't posted on PH for a while as I have been rather distracted.
17 months ago my little boy was diagnosed with a brain tumour - Glioblastoma Multiformae.
Without going into details his treatment included debulking surgery, 2 months in hospital, 6 weeks of radiotherapy everyday, a peg (a tube to deliver food directly into his stomach), a second round of radiotherapy six months later and a massive drugs regime throughout.
He was a tough little guy who gave everything 110%
From being unable to stand up, he learnt how to walk and ride his bike again, he managed to attend school for a year and we were so proud when not only did he enter his sports day he didn't come last in the running race!!
Unfortunately his condition worsened and Yesterday he died aged 5.
I feel numb, upset, angry, hurt,
I miss him so much
Well f
k you cancer fk you!I’m terribly sorry to read this. I don’t have much more to add. I guess other than come here to vent when needed.
You have some tough times ahead of you, but remember that while you had him for such a short period of time, he accomplished so much and has left an indelible mark on you. Grow closer to your wife, talk, don’t bottle it up.
You have some tough times ahead of you, but remember that while you had him for such a short period of time, he accomplished so much and has left an indelible mark on you. Grow closer to your wife, talk, don’t bottle it up.
That's awful OP, my heart goes out to you.
Can I ask, if it's not too painful to discuss, when they diagnosed this 17 months ago, what did they say re his survival chances?
There was another thread recently about the same condition, guy writing about his brother in his 40s, who seemed to have been given the impression that with treatment, his brother would be fine, which ultimately he wasn't. Because the outcome for GM brain tumours is rarely good.
Can I ask, if it's not too painful to discuss, when they diagnosed this 17 months ago, what did they say re his survival chances?
There was another thread recently about the same condition, guy writing about his brother in his 40s, who seemed to have been given the impression that with treatment, his brother would be fine, which ultimately he wasn't. Because the outcome for GM brain tumours is rarely good.
Hi,
Thank you for your thoughts guys, it doesn't change anything, but in a strange way it does help a little.
Twigthewonderkid - I did see that thread - I do not know what his current situation is but GBM is one of the most aggressive forms of tumour and the outcome is rarely positive.
I did read recently the 1 year survival rate is 25%, the 3 year survival rate is around 6%, and the average lifespan from diagnosis is about 14 months.
In our experience I would suggest to him to make a bucket list and start making as many memories as soon as possible whilst he is able.
Thank you for your thoughts guys, it doesn't change anything, but in a strange way it does help a little.
Twigthewonderkid - I did see that thread - I do not know what his current situation is but GBM is one of the most aggressive forms of tumour and the outcome is rarely positive.
I did read recently the 1 year survival rate is 25%, the 3 year survival rate is around 6%, and the average lifespan from diagnosis is about 14 months.
In our experience I would suggest to him to make a bucket list and start making as many memories as soon as possible whilst he is able.
Lanby said:
Hi,
Thank you for your thoughts guys, it doesn't change anything, but in a strange way it does help a little.
Twigthewonderkid - I did see that thread - I do not know what his current situation is but GBM is one of the most aggressive forms of tumour and the outcome is rarely positive.
I did read recently the 1 year survival rate is 25%, the 3 year survival rate is around 6%, and the average lifespan from diagnosis is about 14 months.
In our experience I would suggest to him to make a bucket list and start making as many memories as soon as possible whilst he is able.
Agree I lost my late wife to GBM and there is only one outcome plus it’s horrible towards the end. My sincere condolences lanby Thank you for your thoughts guys, it doesn't change anything, but in a strange way it does help a little.
Twigthewonderkid - I did see that thread - I do not know what his current situation is but GBM is one of the most aggressive forms of tumour and the outcome is rarely positive.
I did read recently the 1 year survival rate is 25%, the 3 year survival rate is around 6%, and the average lifespan from diagnosis is about 14 months.
In our experience I would suggest to him to make a bucket list and start making as many memories as soon as possible whilst he is able.
My son is a little older than yours and my daughter a little younger. I am not a religious person, but there by the grace of god we go and bless you in dealing with your loss.
Children are so life affirming, yet delicate. I can't imagine losing a child at that age. OP I wish you all the strength in the world.
Children are so life affirming, yet delicate. I can't imagine losing a child at that age. OP I wish you all the strength in the world.
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