Day 8 & 9 - yesterday and today

You know it's going to be a good day when the doctor comes in to see you and says, "you guys like it here or would you like to go home?"  Go home...well at least to our "borrowed" New York apartment (thanks Nancy so much!) that will be our home away from home for the next few weeks.  Dr. Laguaglia told Rory and I that as soon as we get him off the IV pain meds Rory can go home and that this should happen tomorrow!  WOOHOO!  Rory should also get his catheter removed tomorrow.  So the goal today is to weed Rory slowly off the IV pain meds and back on to his patches and hydro pills for breakthrough pain.  Then he'll slowly come off of those things as well.  We are hopefully meeting with Dr. Modak today as well to discuss the 8H9 treatment and what our schedule for the next few weeks will look like.  We believe this treatment will be outpatient, but we know will be up at the hospital a lot of the days for scans and blood work.  

Yesterday Rory got his drain bag out of his abdomen and they also removed his epidural.  He did an abundance of walking and was hardly in his bed.  He is getting extremely antsy and bored, which is a good thing because you know he's feeling good, but a bad thing because he gets restless and anxious.  Today he is having some visitors from AOL stop by.  He doesn't know this yet (I'm sure if he did he would want to shave! haha) and I know he'll be surprised to see them and excited to see some other faces besides my own and his parents :).  

Today the doctors also put Rory on his normal diet!  He's pretty excited about that, but the hospital food isn't all that great and his stomach is so small right now he can eat only a little at a time.  But he's doing great and snacking a lot and hopefully tomorrow he will be eating somewhere outside of the hospital :).

If you all would pray and extra prayer for Xander and Patrick, two other DSRCT patients.  Xander is back home after having surgery and the 8H9 treatment here in NYC and is starting another round of chemo.  Patrick is headed back home tomorrow.  He was unable to receive the 8H9 due to scar tissue blocking his port, but hopefully he will be able to get it in the future once that clears up.  He is also going to be starting another round of Chemo when he returns home and hopefully heading out to Maryland for a clinical trial of a new type of stem cell transplant that is suppose to be starting up in the next couple of months.  I don't know the details about this, but he is going to keep us informed as it is something Rory might be doing as well.

Kristen

And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven. - James 5:15

P.S. As I was typing this the nurse brought Rory and doughnut and he devoured it :)