Have you had a chance to read the chapter on coping w/3F8 treatment in the NB Handbook:
I know it is tempting to stop treatment after transplant when your child is NED, but now really is not the time to stop. NED doesn't necessarily mean the cancer is all gone, only that we don't have scans sensitive enough to find the very small amounts that are still there -- many docs believe this microscopic disease is one reason NB has such a high relapse rate. Antibody treatments can "mop up" this disease and give the kids a better chance of staying in remission.
The 3F8 treatments are tough -- there is no denying that. But they are so much better than chemo. The kids usually have pain for 30 to 60 minutes, and they get lots of pain meds for that. After a few hours to sleep the meds off they are up and running around the Ronald McDonald House playing and having fun -- it truly is incredible how they bounce back!
The other good thing about 3F8 is when you leave clinic at the end of the week you are done until the next round (about 3 weeks later). No shots, no fever, no neutropenia, no trips to the hospital -- the kids get to go home and be KIDS!
Also, don't concerned about 3F8 being an "investigational" drug. If Colby is NED and getting it after transplant it is not very "new" -- they might have a new dose or some other little tweak, but 3F8 has been around as a Phase II clinical trial for a while. The Sloan-Kettering docs won't do a phase III trial of 3F8 because they would have to deny some kids the treatment and they don't want to do that. My daughter had 3F8 at Sloan-Kettering 7 years ago and I am convinced it is why she is till here today -- a happy, healthy fifth grader.
I hope this helps set your mind at ease some,
Jen (Mom of Carolyn dx stage iv NB Jan. 2003, NED July 2003, off-treatment Oct. 2004 -- 7 year event-free survivor)
I saw on Colby's site that you are from Madera (I grew up in Bakersfield). Be sure to contact Corporate Angel Network and see if they can hook you up with free flights on private, corporate-owned jets. We traveled with them for 5 years and it was great!