Day 1 of round 3 of the antibody infusion for Jackers. We checked in early this morning and were put into our own room that are usually used for transplant patients so we could have our own space. When the nurse was drawing his labs from his broviac this morning, she flushed the tube with saline after the blood draw and the actual tube blew up a little with a big bubble…this means that the tube is starting to wear thin and it is expected after having it in for so long. He has had the same tubes since he was diagnosed in March so in order to prevent it from wearing thin and getting a hole, we have to replace the bottom part of his tube. After talking with the IV team, they decided to see how today goes and then change it out tonight after the infusion.
They started his antibody at noon and it runs over 10 hours. Around hour 3, Jack started complaining of pains in his tummy and then his legs. He has been pretty uncomfortable the entire day. No fevers so far and his heart is a little elevated, but nothing to be concerned about. We found out that a transplant patient had to come in, so we had to move to a different room about a hour ago. Jack finally fell asleep after we moved into this room…he has been fighting it all day long.
We have another 3 hrs left of the antibody infusion for tonight and then day 1 will be over. It wasn’t too bad today, but it’s never easy to watch you child when they are in pain. He ate really well this morning but once he started hurting, he pretty much stopped eating. Hopefully he will eat a big breakfast and lunch tomorrow in case the same thing happens for day 2. If all goes as planned, we will be done Thursday night and then we get to go home first thing Friday morning.
Dr Eshun just came in and he increased the med he takes for nerve pain so hopefully that will help. So strange because pain is one thing that he really didn’t have at all last round. You just never know with immunotherapy! Some kids sail through as if they aren’t getting anything, and some are much worse than Jack. All in all, he is doing well and his body is responding so it has to be working!!