Rarest of the Rare

Hi Everyone,
First I want to thank everyone, for the gifts, help, prayers and support you all have shown Sam and the rest of our family. Thank you so much.

Sammy has finally started her treatment. The poor girl has shown the courage and what she is made of since this all started. As you all know Sammy is a very fun and spirited, responsible and realistic, sweet and independent, and always cares about others before herself. Well none of that has changed. Because of her great attitude, she has made this alot easier for all of us around her, allowing us to try and keep functioning while dealing with the rest of the family, work and all that life brings us. Why something like this happens to someone so good Ill never understand.

Well to kind of recap and update everyone, this is where we are at.

After seven long and emotional weeks the doctors came to a difficult diagnosis beleiving the cancer to be a rare form of Pancreatoblastoma. Now for those of you who have tried googling " Pancreatoblastoma" you won't find very much. It is called by some the "rarest of the rare". Her Dr. Susan Cohn at the University of Chicago Hospitals told us they have never treated one and throughout the medical network there is listed less then 150 case's reported worldwide. Of those only 17% of them have metastases like Sam's has and just about all of thoses were infants or children under five years old. So Sam's case is very unique.
Which means there is no protocol, stats or anything to base the treatment on or even give us a prognosis. Dr. Cohn stated they have decided to go with a treatment protocol used at St. Judes Children's Research Hospital based on a successful treatment plan for "Neuroblastoma".

Last week Sam started the first of several planned regimens of Chemo. After the second planned session she will get retested to see if the tumors are responding. The goal of her treatment plan is to get her tumors to shrink enough allowing the surgeons to go in and remove them. (if only it was that easy) The surgeries could involve the Whipple procedure for the Pancreas and possibly a transplant of the liver.

The first few days of her chemo went well, then it hit her hard. She did not have a very good Christmas. But Sam is young, strong and was healthy going into to this. She has a great attitude and will to live. Also this rare blastoma is so unknown no one knows what to expect, so with all the modern cancer fighting drugs and treatments it may respond better then anyone can predict. Sam is with top doctors and a great staff of nurse's who are giving her a lot of attention and excellent care. That with Sam's fighting sprit, the prayers and support we are receiving we are very hopeful and optimistic that Sam will (as she says) kick it's ass! Lots of Love, Chris