My son was initially diagnosed at 15 months old, stage 4, MYCN amplified, with primary tumor on his left adrenal gland, but also in his lungs, in his bones in all four limbs, and his iliac bone. The disease in his lungs was stubborn, so between the end of induction therapy and the start of transplant, we also did one cycle of MIBG therapy.
He relapsed about three months before he turned three. We learned that when he tripped and fell and hurt his left leg. Over the next couple of days seemed to be in more and more pain. Ultimately we found that he had a fracture and a new lesion at the top of his femur. Not sure if the fracture was from the fall or the lesion, but it doesn't really matter. He had chemo and radiation that cleared it a couple of months later, then went on a trial (fenretinide) to try and keep him clear.
Unfortunately, he relapsed again after a couple of months (by now age four) with two small soft tissue masses in his pelvis discovered during routine scans. He cleared about nine months later after a trial (celecoxib/DFMO/cyclophosphamide/topotecan), surgery, radiation, and chemo (ifosfamide, carboplatin, etoposide). That brought us to late August 2014. He went on a modified version of the RIST protocol, which was suggested based on results from genetic testing of his most recent tumor. At the beginning of 2015 we switched to the unituxin/lenalidomide trial, as we wanted to get away from chemo. He came off that trial in September 2015 and has been doing off-study pembrolizumab since then.
I've summarized a lot, but feel free to ask any questions. I'm happy to share information on our experience.