Hu3F8 first dose

Dylan had his first dose of Hu3F8 (Humanized antibodies) on Wednesday. We started at 8am, Dylan was pre-medicated with Ondansetron, Vistrol, Claritin, Tylenol and Ranitadine. The infusion of Hu3F8 was for half and hour at 12pm. Dylan had one rescue of Dilodid IV. His vitals stayed good, his oxygen saturation and heart rate remained normal unlike with the regular 3F8 (made entirely of mouse antibodies). He sleep the entire time and only complained of chest pain at a 7 out of 10 pain level. They took an EKG and blood draws until almost 7pm, then we headed home. Due to the dilodid Dylan was unable to walk. Once home Dylan didn't eat his dinner and asked for pain relief for pain in the chest and stomach, he slept and by midnight had a fever of 39.4. I dosed him every 4 hours Tylenol (Panadol equivalent) and dilodid. The next day we went to clinic for blood draws and Dylan was in terrible pain in his legs, chest and stomach. Dr Modak ordered IV didlodid stat. After a few minutes his pain went from a 10 to a 6-7. He dealt with it ok and asked if I could take the IV dilodid home cause it worked better...yeah, not able to do that Dylan. They doubled the amount of oral dilodid to be given at home. Dr Modak explained that Dylan was the first child to have Hu3F8 at 4 times the dose and it seems Dylan experienced more pain than the past patients at lower doses. He also explained that Hu3F8 stays in the body for 48 hours and the pain should go by then, and it did. Hu3F8 is designed to stay in the body longer, that's the plan. There is a small percent of mouse antibodies in the humanized antibodies and that explains the pain. Dylan also complained of neuropathy (pins and needles sensation) in his hands and feet, so gabapentin has been started 3 times a day orally. Dylan explained this as "the glass feels like it has a weird texture in my hand" and I had to change his drink into a plastic cup." Even though this treatment is painful, it is way better than past treatments and especially chemo. You have to remember that this is not a toxic drug going into Dylan's body, that's the beauty of it. No nasty chemical or poison in his blood, it's an antibody that is teaching his own immune cells to kill the Neuroblastoma cells. It does not drop his counts needing blood and platelet transfusions, it does not cause him to be immune suppressed and exposing him to the risk of other infections. It doesn't make his hair fall out or make him vomit and loose weight. Dylan is totally back to normal now, however next Wednesday we do it again and he will face another 48 hours of pain. My little fighter, fighting the biggest fight of his life for his life. My little man, a brave super hero.