Time for an update. Well we re all ok, apart from the usual winter cold & flu’s effecting all four of us and Dylan’s various body pains that seem to bother him one week to the next in different areas. Dylan had scans last week, in preparation to start the new Protocol of Perifosine & Temsirolimus. All is stable but he did have an elevated liver reading, so the study was postponed until this week pending liver blood results. These tests showed that his liver is now in a range that will allow the study to commence, and Dylan is scheduled for the first infusion this Friday.The liver issue was most likely related to his recent antibiotics necessary for his sinus infection.
Another Australian NB family emailed this story to us about a famous Australian Red Symons. This video speaks about his inspirational son, but what really made me gasp was the errors made by the RCH in
Over the past few months I have been saddened deeply by several children/young adults who have passed away, one of which was Eric who came to visit Dylan at RMDH. Many children have also relapsed, some who had been NED (no evidence of disease) for 4 or 5 years. Children we know very well. Please pray for all the kids who are facing relapse. It really is a horrible emotional turmoil, and like being diagnosed all over again. It just reinforces the fact that this cancer cloud hanging over our heads is forever and very real, whether your NED or not. Does being NED really mean anything anyway? We have never heard those words about Dylan, and of course we long to hear them, but I can’t say that it will make me ever believe that the fight is over, nor relieve the fears of loosing my son. We are very fortunate and thankful that even though Dylan has never been NED he has remained “Stable” since being in the care of MSKCC and his Neuroblastoma has not progressed. This has put us in a plateau state and not given us the harsh roller coaster ride that many other families experience. But hence that cloud hanging there, when will it progress? Tomorrow? Next year? Never? Will that cloud ever be replaced by the sun again?
