Bring on the Antibodies!
We finally made it to the antibody stage!!!! The antibody that Paris is receiving is 8H9 and is tagged with radiation and only travels within the cranial/spinal fluid to target any microscopic neuroblastoma cells that may remain. 8H9 nis only allowed to be given a total of four times. We started the antibody treatment 8H9 on March 3. The first dose was a test dose. It was 2 mCi. The next two following days March 4th and 5th Paris had her ommaya tapped and cranial/spinal fluid was drained and tested. Pet scans followed to ensure the flow of the antibody. The scan showed that the antibody engulfed the entire area, with the thought that if any cells remain they would be surrounded and attacked by the antibody. She received her second dose March 10. This dose was much stronger 34 mCi and classified her as radioactive. We had to spend the night in isolation in another hotel room. The following two days she received a crainal/spinal tap to check the fluid and test teh level of radioactivity. I had strick rules for this dose. An average adult is only allowed 500 m rem per year. Paris was giving off 190 m rem per hour, meaning that if I held her I would reach my legal limit within 3 hours. They told me that I must limit holding her for 30 minutes for the next 3 days, but if necessary can hold her more I would just be over my limit.
Well you know I broke the rule on the second day- how can I not hold her when she is screaming? I think after everything she has went through I can handle a little radiation. She is however less radioactive as the days pass. She is tolerating the treatment very well. She still has alot of energy and has an apetite. Her favorite word is no.. especially to me when its time for medicine. She covers her mouth and fights me til the end. She talks alot, blows kisses and gives high 5’s. Shes such a people person. She started to cruz again so Im hoping that in a few months she’ll be walking/running all around. Elmo and Barney are now tied as her favorite. Her hair is starting to come back and again is totally different than the first two times. In the front its blond with little frizzes and in the back its straight and black. Who knows…. The plan as of now assuming that her scans continue to look the same without significant changes are to finish the last 2 doses of 8H9 on April 7 and 15, which will be an exact repeat of the first 2 doses, another test does and then a larger dose. Then the plan is to start her on the other antibody 3F8 which targets any cells outside the crainal/spinal fuild. Then after a possible total of 14 rounds of that she would start an oral chemo, temodar for 1 year. Good luck with that, I’ll have to teach her to swollow M&M’s.
We were on temodar before for 5 days and that was a nightmare, we had to place an NG tube in order for that to stay down! As always things can change in a second based upon scans. Our next MRI of the brain and spine is scheduled for April 1. There was a noted spot as noted in my last update but they attributed that as post surgery/radiation. If it changes upon the next scan on April 1 they we need to figure out a plan to treat that. So lets hope and pray that the spot resembles the same and we can continue on with the plan. I look forward to seeing everyone soon during my 2 week break!