Craniopharyngioma Tumor in 8 year old

bellaluna000 · New User Joined: 22 Mar 2007 Posts: 2

Can anyone refer me to advice on treatments/neurosurgeons for a Craniopharyngioma with cystic involvement in a 8 year old?

SmartAndGoofy · New User Joined: 09 Sep 2007 Posts: 3

We have a whole bunch of 200+ children from over 16 countries in a internet support group for Craniopharyngioma. I am sure you will find it to be great resource. It is useful at any stage as the tumor always leaves a life long battle. You can contact me too, if you like. SmartAndGoofy@yahoo.com . I will detail after I hear from you. Parent of a Craniopharyngioma survivor. With best of thoughts and prayers. - PK

brainman

PK, in accordance with our policy, you are not allowed to use hyperlinks until you have been a member for one month and posted 10 significant posts or replies. This counts as your first one. I deleted the link but left your email. That way, anyone wanting further information can still contact you.

Also, note the date that the thread's original post was made (March 22, 2007) and that bellaluna has not posted since then. The odds of her seeing your comments are very slim.

Thank you for your cooperation and understanding.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

bellaluna000 · New User Joined: 22 Mar 2007 Posts: 2

Thank you "smartandgoofy" and "brainman" Luckily I was sent an email notification that there was a reply for me in this forum. I will contact you by email. Thank you.

brainman

bellaluna, I am glad you asked to be notified about replies to your post. I hope all is going well? Keep us posted. We all can learn from your experience.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

SmartAndGoofy · New User Joined: 09 Sep 2007 Posts: 3

Hi Jim,

Thanks for letting me know about the policies. I hope the child that bellaluna000 was reffering to is in good hands. I see that you are yourself a survivor. Thanks for your help to let them get in touch. I pray that all goes well with you.

-PK

SmartAndGoofy · New User Joined: 09 Sep 2007 Posts: 3

Hi bellaluna000,

From the small little research I did on the internet, I assume you are still somewhere around NJ. We have a few kids that have done really well in the east (North East?). Some of them met at MA. Since the occurance is around one in a million and no two craniopharyngioma kids are exactly the same, more you know, more it helps. I am sure that you are in safe hands and pray that the child is doing much better. Take care.

-PK

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