My 6 year old daughter was diagnosed with small cell carcinoma of the ovary, hypercalcemic type stage 3 (I think- it was so bad they didn't ever tell me a stage) and it had ruptured. That was in October of 2009. She endured 3 major surgeries, 6 rounds of chemo, an autologous stem cell transplant, 31 days of radiation, and 6 months of Avastin which completed Jan 18 2011. She is now in remission. Our doctor has successfully treated 2 patients with this disease and has published a study. He is the relative "expert" in the field. He is Dr Joseph Pressey at University of Alabama, Birmingham. He is very willing to speak to other patients that are being diagnosed with this tumor, and is trying to set up a database so that people like you don't have to hear how rare it is and how they don't know what to do. Feel free to have your doctors contact him, or contact him yourself. He is also a partner in a study about this tumor: http://www.tgen.org/research/index.cfm?pageid=1467. They are looking for patients so they can learn more about the tumor. They have suprisingly found quite a few survivors, and weren't expecting to do so. Good luck!
The name of the book by Robert Liardon is "Smith Wigglesworth on Prayer, Power and Miracles" I hope you find it helpful
During my journey with ovarian tumor, I found my gyn/onc had alot of information regarding my condition and treatment and it was helpful to me knowing I was not alone. I found hope and comfort in 2 books. One by Dodie Osteen and One by Robert Liardon about Smith Wigglesworth.(check internet search engine for details). I understand the feeling of having your legs kicked out from under you and a punch to the gut all at once. I'm not sure where you live but seek the best care for your daughter. I got a second opinion for my condition and the second doctor helped me understand things and removed fears I had.
There is always hope and we must never lose it! It is devastating to get a diagnosis like that...especially at 17. But, there are clinical trials and new advances every day. Is your daughter being treated by a gynecologic oncologist? You can talk with her gyn/onc about all possible treatment options. But, hope sustains life and if you think of it...we are all going to die. None of us knows how many days we have left. Although this is very sad, tough situation, your daughter needs to keep her hope too. She and your family will go through different stages of grief and fear. But, always remember, there are many who have had long remissions and beat the odds. The odds seem grim, but your daughter has age on her side and may be the one who beats those odds!
Hang in there!
Shelly