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Original topic post: brain tumor germinoma
posted: 06.02.2009
message: if anyone can help us my child still not doin to well wif side effects of his treatment. he is still very tired is missin alot of his schoolin.he is now goin to school part time.if anyone has been through this&has; got any tips on how to help us please get intouch.his sleep pattern is terrible.he was diagnosed wif a brain tumor-germinoma.there is not much info on this if anyone has a child wif this condition please get intouch thanks.
Reply 1: Helpline
written by:
darrenf
posted: 13.02.2009
message: You can contact the Child Cancer Helpline team at: <email address removed> or telephone: 0800 197 0068. The Child Cancer Helpline is open Monday to Friday, 9am – 5pm.
Reply 2: germinoma
written by:
shella
posted: 03.03.2009
message: I have to say that I am a bit disappointed. I no that I am not the only parent with a child suffering from a brain tumor germinoma. I am also finding it hard. My child is suffering with so many side effects. Please - if any other parent could help please get in touch. I would be so grateful. Godbless. xx
Reply 3: dipg
written by:
sumners
posted: 21.04.2009
message: I am so sorry that you feel so alone, I dont know if I can help you in anyway, my son was dignosed with a diffuse intrencis pontine glioma, sept 08, it is really a terrible tumour to have, and we lost him to this monster on the 31st march,09, i have never heard of the one that your child has, but the one my son had was rare and not many people had heard of it, we went through all the side effects of treatments, all the ups and downs, and i know how you are feeling right now,xxx but please keep strong and never give up hope, we were still hanging onto hope right upto the end, even though we were told in sept that there was nothing anyone could do for us, and we would lose him, my world is totally ripped apart, but please never give up, be strong for your child and give all the love and support that you can, godbless xxxxx
Reply 4: thankyou for yr kind words
written by:
shella
posted: 17.05.2009
message: thankyou for replyin 2 me.i do feel alone as there isnt any info on this.the hospital has give us sum.but i feel i need 2 no more.i did find sum1 in the usa but sadly he passed away a few mnths ago.i do feel i stay strong for my son.but its very hard.he has just had 2 ave a bone scan&he; has 2 start growth hormones soon.im so sorry for yr loss.i thankyou once again.godbless xxxx
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