Surgeon Hunt

This has been a very busy week. We consulted with two surgical oncologists which I will go into a little bit of detail about in a bit.  Then we made a trip to Tucson to get our taxes done. I know that sounds weird...why travel to Tucson to do our taxes. Well, we really like our tax lady, don’t want to switch, and we like to make a mini trip out of.  And get in more on the details of that as well.

Okay, so first surgeon at Mayo Clinic here in Phoenix was nice and very knowledgeable.  He went into a pretty detailed discussion of what the surgery will entail and such.  Answered all my questions and then some.  However some of his statistics for complications such as anastomoses leaks and strictures were not up my standard.  And maybe I’m focusing too much on those stats but I want this done correctly the first time.  I have no doubt he is a good surgeon but I don’t think he’s the surgeon for me.

The second surgeon is at MD Anderson here in Phoenix. We liked him better than the first one.  Was just more personable and seems super intelligent.  However, his stats were about the same as he first surgeon and not up to my standard. So again I don’t feel he right fit for me even though I’m sure he’s an excellent surgeon.

Okay, now the fun stuff. We took the kids on a little road trip to Tucson to get our taxes done.  On the way down, we stopped at the Ostrich Farm! We’ve driven by this place hundreds of times coming to and from Tucson, but have never been. So this time we decided to stop as we thought it would be tons of fun for the kiddos.  Well let me tell you, they had a blast.  They have all sorts of farm animals including donkeys, goats, bunnies, birds.  And you get to feed all of them!!  We all had so much fun. 

Okay, I’m almost done. I told you I had a busy week.  Haha 

So, I recently joined a group on Facebook specifically for people who have been impacted by CDH1.  This group has been an amazing support for me on this journey.  I just got a message today from a guy who has been seen at the NIH in Maryland  by a surgeon who has an open study for CDH1 patients. Well, it’s for genetic gastric cancers and HDGC, but he is very interested in CDH1.  This is kind of exciting to find out about this.  Like almost surreal that I’m even in the know. I feel pretty amazing about it right now. It would be so awesome to go somewhere with such cutting edge information and also be apart of making the future better for anybody with CDH1 including my kids.  And to top it off not have to worry about the financial burden of treeatment and eventually surgery.

Okay, I’m done for the day.  See ya soon