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9 yr.old child w/ pilocytic astrocytoma

willow616
Posts: 1
Joined: Apr 2003

I was hoping to hear from some other survivors of pilocytic astrocytomas. My niece was diagnosed at 9 and underwent surgery to have the tumor removed; it was low grade and considered benign. She did not need chemo. or radiation afterward, the doctors believe that it was completely removed (99%). She was in a coma for a month after surgery and when she awoke was unable to speak, eat, walk, daily basic functions were gone. It has been 1 1/2 yrs. since her surgery and she is recovering well, walking, eating on her own,talking, etc.. Her balance is so so her memory is what they refer to as "swiss cheese effect" because there are alot of holes in her memory. What I want to know is if anyone has survived from this tumor and how there recovery went. We are told recovery takes years. We hope and prayer every day that she will have a full recovery and that this tumor never shows up again. I pray for all of you who have gone down this road; it is truly a heartbreaking and life altering experience. God bless and watch over you and your loved ones.
Lee

jen8675309ren
Posts: 2
Joined: Apr 2003

I am 25 and I am a survivor of a malignant astrocytoma. My tumor was on the right side of my brain in a part of the brain that is unused so I didn't have the difficulties that your niece had and still has. My recovery was relatively quick and I was out of the hospital in four days. My doctors also believe my tumor is gone but they are monitoring me with a MRI every three months and will probably do so for the rest of my life. It was the scariest for me when they told me that the tumor was so slow growing that I could have had it for half my life but finally on Jan 2 2003 it grew big enough to cause a grand mal seizure that my husband unfortunatly had to watch. Did your niece have any seizures prior to them finding the tumor? If so is she on any anti-seizure medication? I wish your niece well and while the road to recovery will be long I'm sure she will live a long, healthy, normal life...God Bless!
-Jenny
Wisconsin

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