NED - NOT YET!

Well I know it's been a long time since I've updated (over a month) and I'm sorry to those of you who have been wondering what's been going on (if anyone still even check this).  We've been living life and doing a pretty good job at it.  We've been enjoying weddings, lakes, football games, beautiful weather, golf and just being around all our friends and family.  Life has been pretty good :)    

That was until this past Thursday when we had our follow-up doctors appointment at U of M and learned the results of Rory's CT scan.  After everything Rory has been through these past couple months (surgery and the 8H9 trial) his scan showed us just how stubborn and relentless this cancer is.  He has two new spots of concern with one being the size of a golf ball near his lower left pelvic area and small spots near his liver.  UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

So here we are in chemo mode again!  Rory just got done with his first day of Round 1 of chemo.  He will be on Irinotecan and vincristine for this first round and with the next round we will probably add Temador or replace the vincristine with the Temador.  Don't know the plane yet.  Rory will be doing this treatment for about 4 or 5 rounds (1 round = 1 week of chemo/ 2 weeks off).  Our doctor has also been in contact with the National Cancer Institute (NCI) for a Allogeneic Stem Cell Minitransplant.  While I don't know the details about all this I know that the hopes of doing this is to replace Rory's immune system with a new one (from a donor) that will attack the cells that keep making this horrible cancer.  They will first test Rory's brother and sister to see if they are a match and if not he will be put on a donor list to find a match.  If his brother or sister are not a match, finding one can be a pretty lengthy procedure and I would ask that any of you reading this would prayerfully consider getting on that donor list.  So that's our plan for right now.  Our doctors (both here and in NY) are hoping that the chemo will get rid of these pesky tumors present and as of right now another operation is not in the talks.  

While Thursday was a rough day for both Rory and I we have entered into this week 1 of chemo with our heads held high and boxes gloves on.  We again are ready to FIGHT.  So while no evidence of disease is still something we long for to hear from our doctors mouths, we're focused on beating this thing  no matter what it takes.

Continue to keep Rory in your prayers.  Pray that this chemo kills the cancer for good.  Also pray that Rory tolerates this chemo well with no side effects.

Also, as you can see, this cancer is nothing to joke about and more research needs to be done to find a cure for it.  Gift To Cure is an organization whose purpose is to raise money to fund research and to help families financially who are battling DSRCT.  Go to their website http://www.gifttocure.org/ Learn a little bit more about the cancer and what the organization is all about.  There is a lot of good information on their website.  Currently this month they are running a $10 campaign.  The goal is to raise $50,000 but so far only $2000 has been raise!  Please, Please, Please consider giving to this charity!

Kristen

The song "Fight Another Day" by Addison Road is a perfect way to describe what Rory and I are going through right now.  Download it and listen to it.  Here are some lyrics.....

"Have a little faith when the walls cave in,
Pray for strength to fly against the wind.
Will you walk away when the fire gets hot,
Or fight another day?  


Even when your heart's been broken,
He'll be there with arms wide open.
Be strong and his love will lead you to fight another day"


we are fighting ANOTHER DAY!