My two year old son, Harley, was diagnosed in August of 2008 with stage IV Neuroblastoma just before his two year birthday. He went through several surgeries, five rounds of chemo, two and a half weeks of radiation, immunotherapy, and a bone marrow transplant. I thought it was almost over and things seemed to be going well for him. He is extremely active...like a little monkey. He climbs on the window seals in the hospital and runs up and down the halls. During transplant he broke his chemo line twice because he was so active. He definately kept the nurses and I on our toes. He seemed to be improving and we were able to remove his lines. We did routine scans about a month and a half out of transplant when we found out he had three new Tumors ( two in his leg surrounding the knee and one in his jaw). We gave him radiation treatments for the one in his jaw so that he could eat and to help with pain. He doesn't qualify for any clinical trials because he has active tumors and because his platelet levels are too low. We tried Cytoxin for 6 weeks Zometa every four weeks (which we only got to do once) and he didn't respond. He now has another tumor in his skull. He is currently recieving a combination of oral (temodar) and IV (irinotecan) meds administered every day for one week followed by a two week break. We get our new scans mid July and I am so scared. I have been overwhelmed with anger and grief and I don't know how to be there for the others in my family.I have a six year old daughter and I try to be patient with her but she is so defiant and I don't have the energy to deal with her tantrums. My husband won't deal with anything because he says he won't until he needs to. I don't know what to do with myself. I just want to go back to a normal life and work. I miss the normal everyday chaos of getting up and trying to gwet the kids ready for school while getting myself ready for work. I just graduated college and I can't do anything. I can't plan anything in our lives because we don't know what direction we are heading. I know there are others out there that have almost identical stories and If anyone has any encouraging words or miracle stories to share I'd love to hear them. Thanks!