Post 8H9

Yesterday Rory was able to get the full dose of 8H9.  Hip-Hip-Hooray!  While my original plan was to stay overnight with him in the room as I usually do, the fear of getting too much exposure to the radiation that Rory would be giving off deterred me.  Instead Rory's parents and I left Rory just after his injection which was about 4:30pm yesterday.  He is finally "cool" enough for us to visit with him and be in the room with him and the plan now is for Rory to get discharged hopefully any minute now!

Rory tolerated the 8H9 dose really well and now we just pray, pray, pray that it works and kills all the microscopic cells in his abdomen as well as help in preventing it from coming back.  The plan from here on out is for Rory to have a few more days of PET scans and blood work and we both are beginning to see a plain ride home to Detroit in the near future.  Ahhhhhhhhhh, we can't wait!  That will be a wonderful day and one we are dreaming about!

I wanted to share with you all one of the personal hurdles I have gotten over during all of this.  After Rory's trial dose of the 8H9 on Monday he had to have several blood draws for monitoring.  The problem was the blood draws had to happen during hours where the clinics would not be open.  As they were telling Rory and I this, all I could think was, "well how is he going to get his blood drawn then?  This seems stupid that we didn't plan/time this better!"  Never did I think they were going to ask me to do it!  But there we were, sitting in the hospital room with the doctors and nurses and I was practicing drawing Rory's blood.  For those of you who know me, you know that I DO NOT like blood or needles and both of those things give me the heebie jeebies.  However, I am proud to say that I have since drawn Rory's blood a handful of times and I have been quite the little nurse :).  Blood, needles, pshh!  They've got nothing on me!!!!

Also, if you get a chance, checkout http://www.gifttocure.org/ a nonprofit organization that was recently created for DSRCT awareness, research, and fundraising.  The creator is a mother, Loiss Klopper, whose son, William has been battling DSRCT since April 2010.  You can also become a friend of Gift To Cure on facebook.  As we all have been personally touched by Rory and his battle with DSRCT, let's help other families who are also struggling or will struggle with this horrible disease in the future.  You all continue to do an outstanding job supporting Rory and I through this tough time in our lives, but don't stop there.  Check out Gift to Cure and help as you see fit!    

As always, keep the prayers coming!

Kristen

"For nothing is impossible with God." - Luke 1:37

8H9 - let's try this again

Well after a nice little break from visiting Sloan Kettering everyday we are back for day 1 of the 8H9 trial re-do.  Rory successfully had his port replaced last Tuesday.  The doctors gave us orders to flush the port with heparin every six hours in hopes that this would deter a fibrin sheath from forming again.  So for the past week, Rory has been doing this at the apartment and so far everything has been just fine.  We also came in last Thursday for the doctors to check the port out themselves and to test it.  They flushed it with a lot of saline and everything went in with ease so now here we are waiting for Rory to get his trial dose of the 8H9!  HOORAY!  Once Rory gets the trial dose, he will have to flip flop from side to side every 15 minutes for an hour.  Then they will flush out his abdomen with 2 liters of saline.  After all of this Rory will be taken for a PET scan so they can see if the 8H9 is going all throughout his abdomen.  Then we will be back tomorrow and Wednesday for more scans.  On Wednesday Rory will also be admitted to the hospital and then on Thursday he will get the full dose of the 8H9.  Come Friday he will hopefully be "cool" enough to go home.  Meaning, the level of radiation from the 8H9 will be safe enough to leave the hospital.    We are very excited for this process to be starting again and are very hopeful that this time it will actually work.  Please, please, please pray that the port does its job and that the 8H9 far exceeds the doctors expectations of killing any microscopic cancer cells.  


Rory has been feeling great these past couple of days.  His appetite has fully returned and he is once again enjoying food!  Something that Rory LOVES.  He has also had more energy and has been able to do thing.  This past weekend my parents along with my brother, Jason and his girlfriend, Amy, have been here in NYC with us.  We have gone to a couple movies, did the tour bus around NYC, and have eaten ourselves silly.  Rory's company treated all of us to a wonderful dinner at the oldest steakhouse in NYC called the Old Homestead Steakhouse.  It was delicious and we were so full.  It was our best night here in NYC.  We were able to enjoy each others company as well as the food and just relax.  That is a night none of us will ever forget and something we will talk about forever.  


Despite not being able to go home August 7th and being homesick, our spirits are high!  God is definitely taking care of us and we feel so very blessed to still have this opportunity for Rory to get the 8H9.  I will continue to keep you all updated.  I know I haven't written anything in over a week.  I was home for a little while for my grandma's memorial and then with my family visiting, we have been busy. But that's a good thing!  I don't know when we will be heading home and while we are hoping soon, we are being patient (or at least trying to be). 


Kristen


"Give thanks to the LORD, for he is good; his love endures forever." - Psalm 107:1