So we had only 1 day left and her heart continues to beat irregularly. That’s a one way ticket to ICU for more tests. Stuck in New York AGAIN!!! Last dose of IV3F8 Postponed!!!! They decided to put Paris through surgery to pull the metaport to see if the cathader impacted the heart beats, but it didn’t and now Paris is stuck with an IV. She’s recovering. I’m very nervous to learn the outcome of further heart testing. Please keep her in your prayers.
We returned to New York on May 3 for the IV3F8 antibody treatment. Paris began IV3F8 to target any microscopic or remaining tumor neuroblastoma cell within the body. This treatment is scheduled for 5 days out of the month. The doctors want to get at least 4 rounds in, assuming she doesn’t become HAMA positive beforehand. I had prepared myself for the worst as the stories vary amongst people who have received it. Its very difficult because as a parent youa re told that you want the child to experience pain which is an indicator that it is working. As Im talking to the doctor I’m asking if Paris is experiencing the most pain possible and then wondering about the context regarding what I’m saying. What parent asks if their child is having pain because they want them to? Its a strange position to be in. The way the process works is that the neuroblastoma is within the body and is seen as part of the body, the white blood cells do not attack it becasue they see those “bad” cells as normal. The IV3F8 antibody is derived from mice so those antibody carry a marker to cells attach themselves onto the Neuroblastoma cells. The white blood cells see those antibody cells as foreign and since they are attached to the Neuroblastoma cells the white blood cells attack them. The white blood cells are stimulated by the daily shot that I give her GMCSF.