Antibody IV3F8
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.
The first day was a bit tricky becuase we needed to figure out how much diloted (pain medication) to dose her with, its a fine line determining how much each child can handel because every child is different. Through trial and error we gave her too much and her breathing slowed down to a scary pace where they needed to reverse it with Nycan. Doctors came in and began shaking her in attempts to wake her up because she was in such a deep sleep and breathing was slow. After that everything was calm. Paris exhibited pain by grunting in pain and I could feel her stomach cramp and tighten. She became red, sweaty and cried out in pain and then slept due to the pain medication. At night she woke up and was back to normal, just to start the day again, wondering why I am doing this to Paris-reminding myself that it is for the best.
Day 3 was challenging as well her heart rate is very slow, which is concerning. There could be a few reasons to why her heart rate is slow and not normal. It beats an extra beat like a gallop. They have her on a 24 hour watch. Possible reasons could be that the meta port placement has shifted adding pressure to the heart meaning that they may need to surgically remove the port, casuing a delay in treatment, the stress of antibody could cause an irregular heartbeat or the worst case scenerio Paris has developed the initial stage of heart complications from Chemotherapy treatment. Lets hope for the stress related. I have 2 days of treatment left-overall so far so good, as long as it works.
Mostly she just sleeps and wants to be held and snuggled, which I gladly do. Hopefully treatment will not be postponed and she willnot HAMA after round 1. The overall plan is to go 4 rounds of IV 3F8, if on schedule will finish in August and then to begin 10 months of oral chemo temodar in combination with acutaine. It is said that temodar has no harsh effects like the other chemo treatments so we can ideally have a “normal” life again. Not a bad plan if things can stay low keyed. We will hold on the the last 2 doses of antibody 8H9 and hopefully not have to use them-ever. Its a little scary but for now things look positive and everyone says how great she looks. She gained weight and now weighs 8.1 Kilos equaling 17.8 pounds. She also grew to 28 1/2 inches, however she has a right leg discrepency. Her right foot is 1 inch longer than the left, which can be modified with a shoe lift which is being made. Once thats finished she should be walking/running all around becuase she’ll finally be balanced. Thanks again for your ongoing thoughts and prayers. I’ll continue to keep you posted.
Lauren and Paris