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Brain Tumors, who knows about them?

UtahBill

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Is there a good site on-line for the families who have someone suffering from an inoperable tumor? Our 6 year old granddaughter was diagnosed last week with one that is causing fluid pressure build up, so they immediately made a new hole to replace the one that was blocked by the tumor. She is out of immediate danger, but faces chemo and/or radiation treatment for the rest of her life. They give her 10-20 years depending on controlling the tumor. It appears to be a low grade, slow growing one, pending final lab results, so we are grateful for that.
I don't have the actual name of the tumor yet, will get it when I can from our son.
 

Deegan

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UtahBill said:
Is there a good site on-line for the families who have someone suffering from an inoperable tumor? Our 6 year old granddaughter was diagnosed last week with one that is causing fluid pressure build up, so they immediately made a new hole to replace the one that was blocked by the tumor. She is out of immediate danger, but faces chemo and/or radiation treatment for the rest of her life. They give her 10-20 years depending on controlling the tumor. It appears to be a low grade, slow growing one, pending final lab results, so we are grateful for that.
I don't have the actual name of the tumor yet, will get it when I can from our son.
I am so sorry to hear that, we will all pray for her recovery, and for science to find a cure in the years ahead. Unfortunately I don't know of any sites, but web MD has been helpful for me in the past, they have very good links to every diagnoses.

Again, I am just so very sorry to hear that, and our prayers are with you.
 

Naughty Nurse

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UB - my heart goes out to you and your family.

I can't recommend any specific site, but a google search for "brain tumour" brings up a large number of sites. Search and find the one(s) that you find most helpful.

I think it is so important for patients with chronic health problems and their families to have some sense of control, and this comes partly from information.

Your health care specialists should also be able to point you towards sources of information.
 

Schweddy

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UtahBill said:
Is there a good site on-line for the families who have someone suffering from an inoperable tumor? Our 6 year old granddaughter was diagnosed last week with one that is causing fluid pressure build up, so they immediately made a new hole to replace the one that was blocked by the tumor. She is out of immediate danger, but faces chemo and/or radiation treatment for the rest of her life. They give her 10-20 years depending on controlling the tumor. It appears to be a low grade, slow growing one, pending final lab results, so we are grateful for that.
I don't have the actual name of the tumor yet, will get it when I can from our son.
My prayers are with her and your family.

A friends sister has a brain tumor and they had to make a tube from her brain to her stomach as it was building up fluids causing blackouts and ceasures(sp). It was very scary, but the docs think that through periodic surgery and the tube it can become managable. Where is the tumor at?
 

UtahBill

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vauge said:
My prayers are with her and your family.

A friends sister has a brain tumor and they had to make a tube from her brain to her stomach as it was building up fluids causing blackouts and ceasures(sp). It was very scary, but the docs think that through periodic surgery and the tube it can become managable. Where is the tumor at?
Cerebellum, and she has the same issue, high brain fluid pressure. She got a 3rd ventricularoscopy (sp?) which did not work and had to go back for a shunt.
She is home now and on a diet. At only 7, she gained 10 pounds in 3 weeks. The steroids they gave her increased her appetite a lot. Chemo will be tried first, according to the latest news.
Thanks to all for the prayers. She is special, a lot of spirit for such a young child.
 
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