Thursday, September 15, 2011

Miracles on the Horizon!

There is still so much I can;t tell you right now, but here's what I can.

As of right now I am scheduled in a clinical trial!  The trial takes 3 current chemo drugs and uses them together to see if the outcome is improved.  Unfortunately, that protocol would require me to be in Texas 3 weeks at a time and then I could be home the 4th week.  Then back for 3 weeks off for 1.  This would be for at least 4 months.  That's a lot of time away from home :o(  But we've alreafy started coming up with a plan if thats the way things go.

Now on to the beginning of my miracle...Joe just happened to mention to Dr Z that I had some retinal issues over the summer.  To make sure it wouldn't interfere with the trial I was sent downstairs to see an opthamologist.  But not just any opthamologist....she's also a neurologist...Joe calls her our very own "Dr House"  We spent 7 hours in her office...7 stinkin' long hours....but in the end it was worth it.  She found out I am having a lot more vision issues than I thought.  I knew I was having trouble seeing in the dark, and that I have major amounts of floaters, but she also found  out I have an unusually large blind spot in each eye (think instead of the size of the tip of you finger, mine is about the size of an open hand.)She also found swollen optic nerves, as well as a number of other problems.

So what does it all mean?  She had me go get some bloodwork today to check for a host of things no one has ever checked for.  She also had me go get an ultrasound of my eyes and an ERG (they put electrodes on my eyes...don't worry it didn't hurt at all!).  Her worst case scenario is that I have carcinoma related retinopathy, or basically b/c I have tumors my body is fighting my eyes, and had it not be caught I could have lost my eyesight.  Miracle #1!  My opthamolgist in Ohio said my eyes were fine just the beginning of July. She says we can now save my eyesight!  Best case scenario I don't want to share just yet.  It has a slim to none chance, but I am holding out hope for the chance.  Let's just say it would TOTALLY change my life!  And by totally I mean its HUGE!

Right now, we're basically "on call"  We"re waiting for Dr S to call with what she found, we're waiting to hear back from Dr Z if I can go ahead with the trial, and we're waiting to hear from our study coordinator exactly what the details would be.  But it all hinges on Dr S.

Now besides all that I had a few other perks that made my day...I found out with this trial I won't need to get a port placed...WOOHOO!!!  One less surgery!  I also found out I may be able to stop my lovenox injections twice a day...YIPPEE!!!  But again the biggest news of the day was Dr S possible new theory.  Its killing me not to share, but we want to wait until there is actual news to share.

On a kiddo note...I MISS THEM!  We skype with them every night before bedtime and it has definitely least me :o)  Julianna went to her second day of preschool yesterday (she missed the actual 2nd day b/c she was sick) and when Joe's mom dropped her off she cried and cried "Grandma, don't leave me here!" over and over., it broke Joe's mom's heart.  But when she got picked up, she was all smiles and even had a ladybug stamp for good behavior!

Will is dealing with a yeast infection right now and his favorite part of treatment is getting to run around naked for a little bit each day.  I really hope when we get back we'll be able to keep clothes on him!  Haha!  Both kids have enjoyed playing with cousins, trips to the apple orchard, checking out Oma & Opa's baby cows and so much more.  I know they are having a great time, but it still gets to me when Julianna asks when we're coming home from "this vacation thing".I really miss them!

Well, folks, I promise that as soon as we have a definite answer and plan as to what is going to be happening here I will let you all know.  But in the meantime, pray like you've never prayed before for Dr S and my miracle!  Thanks everyone!

*sorry for any typos, I'm typing in the dark while Joe is sleeping.

1 comment:

  1. Hi Lindsay- It is Tricia from OLOP. I help with LLC and heard what has been going on in your life. I just wanted to let you know that you and your family are in our prayers. I am so sorry I missed seeing you when you came in to preshop. I would have loved to see you and Julianna. She was just a baby the last time we had lunch. I really do pray that this trip provides you with answers! I am still in the area and work part-time so if you guys ever need ANYTHING, please let me know. I tried to look you up on facebook, but I am really bad at that. I wish you nothing but the best! Take care and God Bless you!


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