2nd Round of IV3F8 Delay
We were scheduled to start treatment on Monday for our second round of IV3F8, however we are on delay. This is what happened…
During our first round of IVF8, Paris exhibited some heart complications which put us in ICU to monitor her irregular heart beats. For the ”normal” child this can occur and children can live a regular life with this condition. Paris’ case is a little different because she had a meta port which had shifted over time, which they believed could have been causing the irregular beats so they pulled the port. Their theory was that if it had been the port causing the irregular beats with the 3 week break it would resolve itself. Now everything had to be done per IV. Needless to say I wasn’t looking forward to all of those sticks. I had to follow up with an EKG in Chicago, which showed that it wasn’t the port. Upon discharge in NY they determined that it was a benige complication, but when triggered by the antibody it could make it much worse. I followed up with the EKG and heard no results, so no news is supposed to be good news. I assumed everything was on track and flew out here. When I got here they stuck her twice trying to get the IV and then after said Im sorry we are going to delay treatment. At this point Im in shock because I just spent the night before throwing up and mentally preparing myself for IV3F8. The results in Chicago indicated that the beats were still present. My conclusion is that either the EKG was sent and now in NY read it until I arrived or it was sent late. I could have stayed home for a few additional weeks. So now I’m here for nothing and just waiting until they figure something out.
They are basically saying that with her continued irregular heart beat and the stress and medication of IV3F8 that if the right people are not in place during the treatment 2 things could potentially happen, fatality or her oxygen level could drop so severrely that it could cause brain damage. Both of these possibilities are not an option for me so it is obvious that they want to be prepared or possibly stop treatment all together. They would be more comfortable doing treatment across the street at another hospital but it is difficult to transport the antibody. They are consulting about the next step or plan of action that is best to take. We are just waiting until they come to a decision after their team meeting today.
When the cardiologist consulted with me she seemed extremely worried which was different from teh average “this could happen” discussion. She went on to discuss possible medications to control the irregular heart beat or the option of a pace maker. The only thing that I could keep thinking about is are you serious? My grandfather who was in his 80’s had a pacemaker. Is this really the discussion that we are having. What changed from 3 weeks ago when the condition was still present?! Its totally crazy, you really never know what news to expect when you enter the hospital.
What a way to start… I should have know better-nothing in NY is easy. Im just trying to believe that everything happens for a reason and even though it is a bump in the road maybe it was supposed to happen this way.
Here are my thoughts; First I think we should do a PET scan to determine exacly how much disease if any is left, Maybe that will answer our questions and she may nto need the IV3F8 now. Maybe we will get that other dose of 8H9 in that we missed or maybe we will start oral chemo now I guess I can share one piece of good news, The Neuroblastoma vaccine is ready at Sloan and has been FDA approved. Hopefully she will qualify to receive it. Good things are constantly being developed at Sloan so hopefully the next finding will be that cure.
I’ll keep you posted, thanks for continuing to think about her and your prayers are again very much appreciated.