Thanks, @KyleMatthews for setting up this forum. I think it’s going to be a great resource for NB families.
My wife and I became a part of this club when our son, Micah, was diagnosed with Stage IV, high risk, MYCN-amplified NB in March 2012 when he was 15 months old. After adding MIBG therapy to his treatment before transplant, he finally cleared midway through immunotherapy.
Unfortunately, he relapsed during the last week of the last cycle, in August 2013. We learned that when he tripped and fractured his left femur, which (unbeknownst to us) had been weakened by a new lesion. He cleared again just a few months later, though now with a deformed femur that caused his left leg to be about an inch shorter than his right. Remission was short-lived, as he relapsed again in January 2014 with two small masses near his bladder. More treatment brought him back to NED status in August 2014, and thankfully he’s stayed there since then.
He’s now doing great. He celebrated turning five in December with a perfectly normal day at school. He’s on an easy maintenance therapy (pembrolizumab) that we hope is helping, but which we at least know isn’t hurting, and he’s in his fifth week of recovery from orthopedic surgery to repair some of the damage to his femur. Hopefully he’ll be cleared to do some walking next week, because he’s full of energy and hasn’t been allowed to walk since surgery, let alone his usual running and jumping.
We live in the San Diego area. Most frontline treatment was at our local hospital, but since relapse most treatment has been at (or at least directed by) Children’s Hospital Los Angeles.