Hi all, my 16 year old son has glioblastoma muliforme, an aggressive brain tumour. I am suprised at the lack of support networks around for parents and I just wondered if anyone else felt the same and if anyone was looking for mutual support in the worst situation imaginable xx
My 14 year old girl was diagnosed with Hodgkin's in March. I know it's not the same but I suspect the feelings of utter devastation are. My girl has finished chemo and radiotherapy a couple of months ago but I'm broken by it and don't feel I will ever be the same. I'm sure given time we will all get there. The only positive I have is that time flies. What's the outlook for your precious boy re treatment, has he started yet? I'm so sorry you are in this place.
Blue baby x
Thanks for your reply. I'm so sorry to hear about your daughter, it really is devastating isn't it.
My boy was diagnosed in April after a few months of headaches. We assumed it was stress related as he was starting his GCSE'S but then became unwell and got transferred to Neurosurgery and had emergency surgery within 24 hours! He has had 7 weeks of daily radiotherapy and so far has had 4 cycles of chemotherapy which is still ongoing.
He has been an absolute star, he makes me so proud everyday, he has even managed to go to sixth form and start some A Levels.
I just want to take it all away from him. Life is so un fair, he should be enjoying his life and planning his future but now he says he needs to enjoy things now because he will probably due soon :-(
How has your daughter coped? Is she in remission now?
Lots of love xxx
It's all so awful. Im so sorry for what's happened to you all. I have two sons as well as my girl who have had to watch as our family falls apart.
My girls on 2 monthly check ups and yes things are looking good. It's so horrendous I don't have words. I feel we should be getting on with life but I'm so scarred by this horror. The impact on her physical appearance has been the worst thing for us. Watching as she lost her waist length hair she was so proud of will haunt me forever.
I'm angry this has happened to us. I used to be a practising Catholic and had a strong faith but I feel deserted by God and am struggling with that loss of faith. Not many people post on this site - I've had more support from lymphoma site as I suspect you will have other sites with a bit more support.
I'd love to send positive vibes but I'm all out. I'm sorry.
Sending you all my love xxxx
I realise your post was added three months ago and much might have changed, but when I read your post I felt I wanted to respond. My daughter is older than yours - 20 - and was diagnosed with Hodgkins Lymphoma Stage 2A in April 2016, She is now, thankfully, in remission after 6 cycles of ABVD. I completely understand what you mean about the horror of it all. Its hard to believe such a thing could happen to your beautiful daughter and, like your girl, mine had beautiful waist length hair which is just now beginning to grow back. Like you also, I am Catholic and i can understand your anger and feeling of being deserted by God, but I hope that you haven't truly lost your faith as I know my faith, together with my daughter's strength of spirit, is the thing that has got me through this nightmare of an experience. When things seemed really bad I was able to hang on to my faith and hope in God and my prayers appear to have been answered. God has not deserted you and will be waiting to welcome you back and help you too.
Hope your daughter continues to do well..
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