CancerCompass message board discussion started by jodissis on 12/19/2007 http://www.cancercompass.com/message-board/message/all,19009,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello all,Desperately searching for others like our Jodi.My beloved sister, Jodi, passed away after a long fight with Primary Peritineal Cancer in January of 06. She was only 30. She was treated as an Ovarian cancer patient would be, like I've heard so many with PPC are since it's the closest in diagnosis.What's unique with her, or our story, is that she survived Neuroblastoma as a baby back in '75. Her cancer came back, found in her pelvic floor, in 2000 after a GYN appt.We are trying desperately to find others that came from surviving neuroblastoma as children but have been hit with cancer again in their late 20's. Surviving that cancer was rare to begin with but know there are a few out there, somewhere.  We have a very long story we want to share with the world about her & her care but want to start with trying to find others out there like her/us. We were pretty much told she was one in a milliion, sort of speak. They think it all stemmed from when she was a baby, just laid dormant until she was 25. Ultimately just didn't know. The unbearable pain & surgercial errors/not needed surgeries too that she went through that ultimately triggered an infection that took her was something Hollywood couldn't write. Feel very alone in this world without her & want badly to even help one other woman that feels alone from having had childhood cancer(really neuroblastoma). Want to help others going through the PPC process too since we felt VERY ALONE. So tired of them treating the disease & forgetting there are hopes, dreams & families behind the disease. Wished they'd just listen instead of throwing more meds at her or saying "give it time." A 2 day hospital visit always turned into 2 weeks.Found a site called baldisbeautiful.com, it is an amazing site. She is an OC survivor. Feel we fall under the ovarian catagory, we just need research for PPC. So tired of everything being Breast Cancer Awareness but am happy for those that have it, they have a voice. Have lost 2 friends to that too, it all sucks.My mom, an oncology nurse in Connecticut, took a leave of absence to care for her while my sister's husband worked. My dad, a cardiology tech was given a very hard time at work & my mom went back to a mess too. That's a whole other story.  I will DEFINITELY tell my mom to come to this site to offer help to others. Was a big help, and hinder to her, to have her in the field. We WILL NEVER GIVE UP fighting for a voice for my sister. Next month will be 2yrs with out her & we feel every minute of it after a 5 yr fight.Thanks for hearing my vent. Hope to help others fight. Again, I hope there are other childhood survivors out there. We need to find our missing link.-jodi's sis, Heather jodissis Wed, 19 Dec 2007 00:00:00 GMT