Life outside of the hospital

Even though the time spent in the hospital seemed to crawl by so slowly, I can't believe we have been in New York for two weeks already!  Since we got out of the hospital last Friday (July 16th) not a lot has happened other than relaxation! YES!  Rory is still in his recovery stage, tired and still a little sore, but each day he gets a little better.  Since it has been so crazy hot in NYC we haven't really gone out much of anywhere because it would just be too much for Rory right now.  Rory's biggest complaint is of boredom which tells me he is feeling better and antsy to do things.  Now we've just got to get his body on the same page, it just takes time.  We've gone out to dinner a couple nights and made a trip to best buy (you know he's really feeling better when he wants to go to best buy).  

Yesterday we had a follow up appointment with Dr. LaQuaglia.  Everything checked out just fine and he told Rory that it was time to put some weight on (say 20 pounds or so!!).  So we are on mission: FOOD!  Rory is getting his appetite back, craving foods, and is on his normal diet.  Tomorrow we meet with Dr. Modak, the pediatric oncologist, to discuss the 8H9 protocol and what our schedule will look like for next week.  Rory will also have a CT scan tomorrow morning to see what's left in his abdomen prior to the 8H9.  Most likely Rory will get the trial dose of the 8H9 on Monday and then he will have the full dose either Wednesday or Thursday.  

So things are going pretty smoothly here.  No complaints other than all of us being a little homesick.  I can't express enough appreciation to Nancy, Karen's college roommate, for loaning us her apartment while we are here.  It has been wonderful!  She has even spoiled Karen and I with gift certificates for manis/pedis/and a mini massage!  THANK YOU, THANK YOU, THANK YOU!  I can't wait to indulge! 

If you are interested in sending Rory cards or anything (he would love it), send me a text message or an email  (kdebandt@gmail.com) and I will get you the address to our home away from home.

Kristen

"I will praise you, O Lord my God, with all my heart; I will glorify your name forever." - Psalm 86:12