A crowded room.

“When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child.”

I know you have all heard the expression, "Feeling alone in a crowded room."  That is how I feel when it comes to this disease.  Especially, when it comes to Ashton.  Making choices for me isn't easy, but at least I am making them for myself and I don't really allow myself to think about if it is right or wrong, I just concentrate on what I feel is best.  It isn't so cut and dry when it comes to making huge life decisions for your child.

You know, if it was a cut knee, I could put a bandaid on it.  As mothers, we just want to fix things.  When facing a problem, our first thought is, "How do I fix it?"  With FAP, you don't have a ton of options and you can't really ever "fix it."  Most days that is just not acceptable to me.  It's hard and I struggle and my heart aches.

Ashton had his second colonoscopy/endoscopy this week.  In January, he had 20 polyps in his colon, total.  They removed all of them.  It has been 11 months and he now has many.  They stop counting at 50, so he has 50 plus.  They removed 8 of the larger ones to biopsy and we should get those results back in a week or so.  We pray that there is no cancer at this time.  His doctor felt good about those that she removed though.  However, we had to have that talk that I've been dreading.  At this point, it's timing.  The clock is ticking and we are now gambling.  For some reason, for me, this has been just like finding out the first time...all over again.  "Lord, I'm not ready."  He's telling me to get ready though and I don't like it.

We've decided to wait for the biopsy results and if there is no change, we will wait 6 months for his next colonoscopy.  That gives him a break from it and it gives me time to think.  The goal is to get Ashton through high school before surgery is needed, but if he starts having any symptoms or a polyp changes, we will do what we have to do.

On our way home from Ashton's procedures Monday, Ashton asked me if he could give this disease to his kids.  It was such a smart question for his age and I was so glad that he was thinking that far ahead, yet I found myself really sad when I had to answer him.  I gave him the facts - his children have a 50/50 percent chance of having the disease.  However, I gave him the positive side of it.  There are so many new medical discoveries every day, there are ways of changing genetics and testing for those things and there are other ways of having a child.  Imagine being 14 years old and already having to wonder if you will have to make those decisions one day.  Through my insecurities in all of this, my goal is to make him BRAVE!

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

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