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Intrinsic Pontine Glioma

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Caregiver
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grumpymom
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Subject: Intrinsic Pontine Glioma
Date: 05/03/2008
My 15 year old daughter was dx on 04-01-08 with an intrinsic pontine glioma  and has begun radiation and a radiation enhancing drug in trial. Can anyone tell me what to expect from the radiation besides the list of could be's from the doctors. She is worried about losing her hair, I am worried about losing her.
Subject: RE: Intrinsic Pontine Glioma
Date: 05/03/2008
I am sorry that your daughter and your family are going through this.  I don't know about what your daughter has.  Please know that you are in many people's prayers.
Caregiver
Caregiver
jackiekay
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Subject: RE: Intrinsic Pontine Glioma
Date: 05/04/2008

Unfortunately, I do not know anything about this type of brain cancer or how radiation in that area of the brain will affect a 15 year old.  I did look it up on the internet after reading your post & found a lot of information about it.  One website was called something like "save our dylan".  The son was diagnosed at 18 months and is still doing well about 6 or 8 years later.  I can't remember for sure.  The family has been posting everything they have done since he was first diagnosed.  Maybe you will find it helpful.  My best wishes and prayers to you, your daughter, and the rest of your family.

Jackiekay

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