On 10/18/2005 Nosnod wrote:
my son was dx. with IDPG on 9-3-o3.We have study many diffrent tretmets.he finished his rad, will be 2 years 11-7-03. our little guy is still doing very good is now in kindergarten and loveing it.he took gleevec for 9 months,he lost all the steroid lbs plus a lot more he was very sick while on the gleevec.chemotherapy has shown no help to children with brain steem gliomas.you must ask qustions any and all that you can think of, write them down so you don't forget anything. always remain calm when talking to the Dr. so that you don't miss any thing that they say to you. ask God what he would have you do before doing anything.our son has been on ruta grav and calc phos for 15 months.I am going to check out josiahupdates.com to see if I can find a way to talk to other people and familys I'm not very good with the pc. my son was only given 10 to 12 month at best, that 26 month and 15 days ago.
I would sure appreciate any update you have on your sons condition. My niece was diagnosed last march 2006 with same tumor and we now have her on the ruta6c calc/phosphate. Please send me an update!! Thanks
Sue