Newbie

Hi

 I'm a mother whose son died in June this year after having battled with Ewings PNET for 4 1/2 years ....if you want to speak with me you can ask me anthing I'll be more than happy to help ....if you only want to speak with people who are still fighting you won't upset me, I'm currently intouch with 3 other mothers that I met here, 2 who sadly like me son's have lost their fight & 1 other who's daughter is marching on, we give such strength & comfort to each other ...personally I can give you so much more information on this monster as my journey is now over but anyway hope your son is doing well.

Karen 

On 12/4/2007 SylivaJean wrote:

Hello.  I am hoping this is a "live" msg board.   My 22 year old son was recently (summer 2007) diagnosed with Ewing's and I have been searching for others to communication of their experiences and information.   If you're still out there, please contact me.   Thank you.

Hello. My name is michael and i lost my 34 year old brother to ewings on 11-26-07. His fight was 4-1/2 years and lost his life to an infection. i have lots of information that may help you. Please e-mail me if you want.

On 12/4/2007 SylivaJean wrote:

Hello.  I am hoping this is a "live" msg board.   My 22 year old son was recently (summer 2007) diagnosed with Ewing's and I have been searching for others to communication of their experiences and information.   If you're still out there, please contact me.   Thank you.

Hi My 10 year old son was diagnosed in September 07 with Ewings (the solid kind) apparently there is both soft and solid types of Ewings. His is in the pelvic region (actually on the sacrum) bottom of the spine and also covering on the central nerves.. For me I could find no information regarding the sacrum apparently it is thrown into the same catergory as the pelvic region because there is not enough data on it...Unfortunately this effected me because I couldnt find specific info on that area..

so far he is doing well with 8 chemo cycles now under his belt...he is a veteran and finishing radiation next week. The MRI shows that it has significantly reduced to almost nothing and has not spread...

By now you will feel like a veteran on the disease after the first month but if there is any questions I can answer please don't hesitate to ask...Last week we had all 4 beds in our room with only Ewings Cancer patients...it eye opening and great to swap stories and experiences.