Ok fine I'll type the super long informative one finally!

Hello everyone! Been back from Miami for a couple days catching up on rest, sleeping toooons.  I think the side effect that has hit me hardest from this last chemo is fatigue, I just wanna sleep all day! I still get sick and nauseous, but not as often as I wanna take a nap, thats for sure.  Miami went well, though nothing was COMPLETELY determined, no official answers, so don't get too excited.  A lot was discussed and its headed in the right direction towards this enormous surgery, but its not 100% go yet.  

At O'Hare airport we started our trip, thanks to Mrs. G for the ride so we got dropped off where we needed to be so that I didn't have to walk too far (i get tired.)  We pre-ordered a wheelchair and it ended up being a bad decision as it caused us to be so late we barely made our plane and was a bigger hassle than walking it would have been. Oh well... so after a lovely pat down for weapons since I'm connected to something that will make the detector go off, we got on the plane.  Miami was very different than what I'm used to here.  Wow am I spoiled!  First of all I'm glad I don't live in a city that kind of smells like garbage when it gets very hot.  But it wasn't all awful, we got to eat at Emeril's restaurant (it was in our hotel even) and got some lobster tail fresh from Florida, very delicious!  But on to the medical part.. 

So the hospital in Miami is what most hospitals are like.. (which I've never really spent time in.)  I'm used to the very clean, super new/nice building at Univeristy of Chicago and I've always had my own room with my huge plasma.  When we went for our consult on Tuesday we were in the hopsital for around 5 hours, lots of waiting, even though we only talked to the doctor for about 30 minutes.  Here is what we basically have come to:

The surgery is on besides 3 "speed bumps."  These could just be something that makes it more difficult, and some can actually put the surgery off.  The first is the obvious- insurance.  They still haven't hopped on board and this is quite an expensive surgery, as they are transferring 5 organs all together into me.  (I found out the donor can be as light as 40 pounds and the organs grow with you-wow!)  The other 2 obstacles are medical: one is the small cell that was planted which stopped my first whipple surgery.  Dr. Cohn doesn't think it should be a problem we've never seen it grow and we hope to just have it removed during surgery if he is able to.  If he can't, he will not do the surgery.  The last hurdle is some small nodules in the lungs that Dr. Cohn saw on some slides that she is unfamiliar at looking at.  They were scans ordered by the Miami doctor that I had done here, and my doc here isn't used to using this type of contrast, or using this view, or something like that, which makes her not familiar.  She said they look tiny and might not even be anything.  The Florida doc said he didn't even see them when he looked at the same scan, but we are going to keep an eye on them in the mean time, if they are in fact there.  Those are the obstacles besides that- he wants to do it.

When you are getting a multi-organ transplant you go to the top of the list, which is so comforting.  They said in Miami they have never lost a patient because they couldn't get the organs.  There are not a lot of places that do multi-organ transplants, so theres not a lot of competition for me "on the list."  The doctor I have is honestly known world-wide for his work, he is the pioneer in this, and amazing at what he does.  I'm confident with him working on me, and he is a very nice doctor to talk to, with great bed-side manner.  He gave it to us straight how it is, and comforted us with how down to earth he is.

If we are put on the list they can call us any time and say we got the organs, be here in 6 hours.  So, if things are go, we will most likely have to move down to Miami (me, and my parents switching off) so we can be ready for organs when they become available.  It is a very huge surgery as you can imagine.  The benefits though to doing this many organs is everything is still connected when you think about it.  You don't have to recreate all of those ducts that I would have needed with the whipple, because they all stay intact.  Also all of the blood vessels are all still connected for the most part.  As I said before you can also go down to 40 pounds for my weight, and go up too,  but not too much because well... they need to fit!

While we were in Miami we met the Turns family, which was SUCH a great experience.  They are the sweetest family, and I have my life to thank for Mrs. Turns for reaching out to us and giving us the info that they just went through.   Caroline has the heart of a lion.  She is so courageous I could not believe someone that young was so strong.  She has given me so much comfort for going into this surgery.  She seemed so great!  after seeing an 8 year old do so well, I have to believe I can do this too!  She is who I can look up to as a hero in my life!  We talked to both Mr. and Mrs. Turns for a while and they gave us so much great information that was so helpful, we feel a little clueless in this new city with new doctors and procedures.  

That's about all I can think of that I needed to tell everyone I hope I included it all!  The doctors said for now, keep up with the maintenance chemo, and we'll be in touch!  So for now, we'll be in touch! Lots of love!

Sammy