We are home.... we landed in Charlotte around noon on Saturday and have been very busy ever since!
Our week in New York was uneventful and very familiar.  All 5 days, Grier experienced lots of pain with hives and a high heart rate ( 180's-190's) during the actual infusion of the antibody.  And all 5 days he slept most of the day after we returned back to the Ronald McDonald house-- He also had headaches after treatment.... they were really bad and we ended up sitting in a dark room while he slept.  Each night he would perk up a little by 8:30 or 9 and want something to eat, so of us would venture out to First Ave. and pick up his requests!!  He would go back to sleep late each night and wake up each morning ready for his shot and then we would head to the hospital--- I can not believe this was the 7th week of this type of treatment... 3rd after relapse..... I am not getting any better watching it and listen to others go through it but I have learned that a "good" day of 3F8 is one without crash carts and a team of doctors in your room-- so even though I think our experience is really bad I know we have had a good week of 3F8! Uggh---

Grier started accutane again on monday and he will take it twice a day for the next 14 days.... I have a new emollient, Theraplex that will hopefully keep his skin from breaking down too much during the next 14 days. I am also hoping we do not experience the nose bleeds and headaches.... hmm... am I asking too much?? We will return to NYC on Feb. 7th ( yes, Super Bowl Sunday-- I had a been there done that feeling when I found that out... we were in NY when the Giants won ~) I guess if we will be in NYC for the Super Bowl it would be great for the Jets to win--- :) It will be a week of 3F8 if he is HAMA negative AND a week of scans.... I am trying not to let scanxiety come too soon--- I said TRYING..... I can not believe it is already scan time again.

Grier is at school this week--- I am hoping the next couple of weeks allow him to get in a routine... he has had a lot of "first" days this year!  We also need a new routine at home... living in one room all together for over a month has not been great on the old bedtime routine we had and just "independence" in general--- He has developed new fears and does not like to go anywhere by himself--- even BED!!!

That is it for now--- Sorry for the delay in updates... There is a new password system at the Ronald-- takes awhile to get a password to use the wi-fi--- after I got the password the wi-fi was spotty at best so it was a frustrating week on the computer.

Thanks to all that helped out last week while I was in NYC with Grier and my mom.... dinners, rides, etc.