Dylan started the dose escalated 3F8 study at 2:30pm today. We were discharged from hospital and directed into the out patient day hospital for his therapy. He started with Tylenol, followed by Aloxy, Benedryl, Adivan and Dilodid, then came the 3F8. His heart rate went up and his oxygen saturation dropped dramatically needing oxygen the entire time. The pain started in the chest then to his back and head. Dylan did really well and only had 1 rescue of Dilodid followed by a half dose before we left to return to RMDH. He also got a platelet transfusion today. Back at the house now and he is trying to sleep off the drugs. He is tossing and turning in pain that has now gone to his legs. He cannot describe the pain, he just says it hurts a lot. As hard as it is to watch, it is comforting to know that this therapy is not toxic to Dylan like chemo is. In fact it is not even toxic to the Neuroblastoma cancer cells! This is the theory behind the 3F8 therapy…A person's immune system makes antibodies to attack germs such as bacteria or viruses, but it will not attack Neuroblastoma because the tumor is part of our own bodies. An antibody that attaches to Neuroblastoma can be made in a laboratory and then given intravenously to a patient. This antibody (3F8) will circulate in the bloodstream until it finds and attaches to a Neuroblastoma cell. And then the patient's own immune system will attack and kill that Neuroblastoma cell.
Please keep our friend Nick in your prayers. Nick was doing fantastic for a Neuroblastoma teen, 1 year NED, but just last week found out he had relapsed with several spots. Dr Cheung, the head of the Neuroblastoma team at MSKCC, who spends 99.9% of his life in the laboratory, has offered the family to be the first to try the 8h9 study intravenously. This is very exciting and something that has come to the attention of the Neuroblastoma world unexpectedly, as we had no idea this was bubbling in the lab! This has been used very successfully in Neuroblastoma brain relapses but never for metastasis. Again, without warning another option, a light shining through a crack of a slightly opened door of hope.
As often as I write about the sad facts of Neuroblastoma children relapsing or passing away, I have to remember the many successes. It’s easy to look and talk about all the bad things, but in actual fact, we tend to forget about all the children treated at MSKCC who have successfully reached NED and stayed that way. There is Josh, Jeremy, Erin, Ryan just to name a few. I guess we talk about the relapses and the deaths because the walls at RMDH are sounding boards for support and sharing of grief, and because the successful children are only at RMDH for a few days of scans a few times a year. Anyway, enough rambling, I have to try and rest when Dylan rests, so that I am able to console his pain as best I can with medication, heat packs, massage, and of course a mother’s soft voice of comfort in his ear.
