Support

On this day, I was able to meet up with a woman who had her PTG 14 years ago.  At a time where it was more rare than it is today, especially with CDH1.  I thought it was so amazing that a complete stranger was willing to take time out of her day to meet and talk to me about CDH1 and PTG and her experience with it all.  I've really come to understand the close knit community CDH1 patients have.  I've met many people via Facebook who have similar stories and we are able to reach out to for support as we need it.  Which is something I find very comforting.  I'm a big believer in 'everything happens for a reason' and truly believe each one of these people have come into my life for a reason, which I might not be clear on at the present moment.  Anyway, back to the woman I met with today. I don't remember much of what this woman said now (several weeks later since this post is being written on June 7, 2018), but I remember how caring, honest, thoughtful, and sweet she was.  She told me all about her family and her story with CDH1.  Which was all very comforting to hear.  She asked me several questions about my story.  We sat outside on a beautiful day and just talked and even cried.  I do remember when we were parting she said to me "think of me as your aunt Laura, and if you ever need anything please call me.  If you need a babysitter, you have a questions, anything at all, please call me"  This was so sweet of her to say, but I truly did feel close to her after our conversation.

My family always has been, and I think always will be very supportive and I truly love them all for that.  But I get a different kind of support from people who can relate and have walked a similar path.  My situation is a little unique as I'm the only person in my family who knows they have CDH1.  I'm much closer to my mother's side of the family and my husbands family than with my dad's side of the family (which is the side with CDH1).  As you know, I've reached out to his family but haven't gotten much interest in the topic.  Which again...to each their own.  And my brother, at this point in time, does not want to get tested for CDH1.  He has always had a completely different outlook on life than I have, and I will not judge him and will try to support him in his decision.  He does not have any biological children, so he doesn't need to find out to see if it affects them.  But he does have a wife and 2 step-children to care for and worry about.  But I digress...so, I'm really cherishing the little CDH1 facebook community.  So thank you all for being so supportive, compassionate, and kind.  And of course thank you to all my family who have supported us in their own unique way and will continue to stand right beside us on this crazy CDH1. Love you guys

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