UPDATE!!!!!!! I just wanted to let everyone know that Rory's catheter surgery is no longer tomorrow, but will be Tuesday, August 3rd instead. Long story short, they wouldn't have the 8H9 drug ready for Rory to receive next week and they don't want to put the catheter in too soon or else the same thing will happen as last time (blocked catheter). So by waiting till Tuesday the catheter won't be in Rory as long and the fibrin sheath will have less time to form. Rory will get the 8H9 the following week (week of August 9th).
In other news... My Grandma Debandt (my dad's mom and last surviving grandparent) passed away this morning. Please keep my family in your prayers. My Grandma Debandt has prayed for several years that her "homecoming" would be soon and her prayers have finally been answered. She is in a much better place now and is pain free. I will be hopefully flying home in the next couple days to be with my family and say my goodbye.
Just as we were getting excited about an August 7th homecoming, it seems that God has other plans for us. We are in the "who knows when we are coming home" phase again. As you all know Rory was suppose to get the 8H9 this week and well, that didn't go as planned. Rory's catheter has formed a fiberin sheath (debris build-up) arond it preventing the 8H9 drug to enter his abdomen. Instead of getting the full dose of 8H9 on Friday, Rory will be having a minor surgery to remove the defective catheter and Dr. LaQuaglia will be replacing it with a different temporary catheter. We don't know when and if Rory will be receiving the 8H9 treatment and as of right now everything is on a day-to-day basis. We are remaing positive. Obviously we want to try and fix this problem so that Rory can recieve the 8H9 and we're not givng up. We knew going into this that the 8H9 was a phase I trial where details are still extremely new and are still getting ironed out. We still have faith in it and we are now praying that the surgeon can successfully replace his catheter with a new one and that Rory wil be able to receive the 8H9. The surgeon said that this new catheter would just be a temporary one that they would remove from Rory before we go home. His thoughts were that if he could just get a catheter into the abdomen where it needs to go long enough for Dr. Modak to administer the 8H9, everything should work just fine. We shall see! Just continue to pray that this all works out and Rory gets the 8H9. We need for a successful surgery on Friday and for Dr. LaQuaglia to be able to replace the catheter with a new one that will allow for Rory to get the 8H9. We don't know it to be a miracle drug yet, but without trial participants, we, along with the doctors heading this study, will never know .
It seems that we can never get to comfortable with the way things are going before we seem to hit a bump in the road. And while Rory and I are both taking this pretty well, we are both just homesick and had our hopes on being there soon. We both remain confident in God's plan for Rory and are just taking things one day at a time.
Numerous songs have hit home for me during all of this so instead of a verse, I will share this song with all of you. Download Josh Wilson's, "Before the Morning". The whole song is amazing, but the verses that always stick out to me are these...
"Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see"
"and hold on, cause there's good who love God,
life is not a snapshot, it might take a little time,
but you'll see the bigger picture"
"Would dare you, would you dare, to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming"
"so hold on, you got to wait for the light
press on, just fight the good fight
because the pain you've been feeling,
it's just the dark before the morning"
Keep the prayers coming :)
Hi everybody! I created this blog so that you all could cheer Rory on throughout his battle with DSRCT. I know all of you care so much about Rory and want to be updated on everything going on and so I thought a blog would be the best way to do it! Thank you for all your love and support.
"Trust in the Lord with all your heart and lean not on your own understanding" - Proverbs 3:5