Not yet defeated...

“It is inevitable that some defeat will enter even the most victorious life. The human spirit is never finished when it is defeated...it is finished when it surrenders.”

This post will be mainly for those of you with F.A.P. and for parents of children with F.A.P.  Also, I should add, this is only my opinion. 

Please, please make sure you get a second opinion and that you talk to your gastroenterologist and a surgeon.  I suggest talking to several doctors before speaking to your surgeon and making a surgical decision.  You truly want to have ALL the information beforehand. 

A few things that you might want to ask, that I did not, are:

1.) Can I get polyps in my J-Pouch, K-Pouch (or whatever you might have) after my large intestine is removed and my pouch is created? 

2.) If you have stomach polyps, what TYPE of polyps do you have and what are your chances that those polyps will turn into cancer?  F.Y.I. - the second leading cause of death in anyone with F.A.P. is stomach cancer.

3.) Is F.A.P. in every cell of my body?  The correct answer should be yes.  This means that your skin and bones can also form tumors.  Any of you with Gardner's Syndrome understands that is true already, but just ask the question anyway.  You need to have your liver and thyroid checked on a regular basis and, if you are a woman, your reproductive organs.

These are questions that I did not ask and now I wish I did.  Would it have affected my decision making process?  Maybe, I can't look back now.  Something that I want everyone to understand, is that this disease does not wait for you to decide it's time.  It is an aggressive disease that isn't understood completely by doctors, so you have to stay on top of it.  They do not know what causes the gene to mutate and they still do not understand how to prevent it or cure it.  So, having said that, please understand how important it is to stay one step ahead of it.  I'm only one person, but I hope to find a way to educate more people about this disease.

Having said all that, Ashton goes for another colonoscopy/endoscopy soon.  Please keep him in your prayers.  We had our first dental visit today after finding out that Ashton had Garnder's.  He does have several problems with his teeth, but the dentist is hopeful and optimistic that we are ahead of the game and everything is able to be fixed.  Right now we only have two teeth to be concerned with.  YAY!  Next step, braces!

Information about Familial Adenomatous Polyposis at: http://ghr.nlm.nih.gov/condition=familialadenomatouspolyposis