Friday, August 8, 2003

Friday, August 8, 2003 10:03 AM CDT

Luke here. Where to start? Ah, I guess I should start where Susan left things off. Nathan started his chemo on Wednesday even though he technically didn't quite make counts. This was great because it keeps us "on schedule" (if there is such a thing). As Susan noted in her entry, due to the impact of one of his chemo meds on his heart function, they have changed how they are running his meds. This seems to be a little harder on the poor little guy's system. Wednesday night was a rough one in the Gentry household. He came home exhausted from chemo. I guess having toxins pumped into your body for 6 to 8 hours will do that to you. He went to sleep well. We are still giving him IV antibiotics for an infection around his central line site, so I went in to give that to him at 10 pm and when I was taking them off at 10:30 he woke up and got sick. He emptied his stomach pretty quickly and proceeded to dry heave for most of the night. He got a few hours of sleep in the morning. Susan slept in his room on the floor for much of the night.

Yesterday I took him in for his chemo. We got a quicker start than he did on Wednesday because they didn't have to check his counts first. He had a bone marrow aspiration in the late morning. Because he was getting this procedure he couldn't eat in the morning. He was planned to have the procedure in the afternoon, but the nurse heard him begging for pancakes so they moved it up (and one of the staff ran to McDonald's to get pancakes for him - great people). Nathan has had many of these procedures. He has had them totally out while getting other surgery and this was the second he has had in the clinic. They drug him well, but he is awake. I have been there for both of these. The first one went fine. He was awake but not really aware of what they were doing to him. This one he was pretty upset. Nothing horrible and I think there was really only one part that caused him any pain, but he was upset by all of the pushing and etc. Here is what they do. I won't get into too much detail, but this may be a little more than the queasy want to here. Feel free to skip to the next paragraph (I'm on a roll this morning!). They get him a little drugged up. They started him with fentanol. This stuff hits him quick. I was holding him and within a minute he told me, "The benadryl makes me feel funny". From here they kept giving him fentanol and versed (sp?) but I lost track of how many doses and when they hit him with it. He is laid down on his stomach on the exam table. They clean his lower back. Then they perform the same procedure on both hip bones right above his bottom. They shoot up the spots big time with lydacain (sp?). At this point he feels this and it does hurt. They put that needle in deep and shoot enough of the drug in that the site welts up pretty good. Then they take a short spiky and pretty thick needle-like device and push it down hard into his hip. I'm not sure how deep this goes or if it pierces bone, but they really push it down there good. From this they attach a syringe and pull out the aspirate. Then comes the fun part. They take a device that is a long, thin (thin I suppose if it isn't intended to drill into your bone) cylinder with a handle at the end. They stick this thing into the site and screw it down good. They push down hard on his back and really crank away. I don't know the details of how deep they go, but it cuts away and then they screw it out. Then they insert a thin metal plunger down through the handle and push out their core sample. After that they put guaze and a pressure bandage down on the puncture wounds. Normally he comes out of the drugs really horribly but the pancakes did the trick and he calmed down really well.

Okay, after the nasty procedures he had a pretty good day. He ate and kept it down. We played with cars and trucks a lot. He took a short nap in the afternoon. After his nap he was really, really cranky but it wasn't too bad because we finished up and left the clinic by 4pm. He made it home without getting sick in the car which I viewed as a miracle. In my opinion alone with him in the car is the worst time for him to be ill. He handles it well and holds his bin for himself, but I just feel so bad for him and want to help. He threw up in the evening, but then had some dinner and went to bed early. He slept through the night without any problems. Apparently his IV fluids became disconnected and just soaked his bed with saline all night, but he just found a dry spot and slept. He got sick this morning before he left for the clinic.

And that pretty much brings us up to about 45 minutes ago.

In general, this is a pretty nervous time for us. Technically this is the last day of chemo of the last cycle for him under the protocol he is being treated on. If you want something to pray or send positive thoughts about, it is this. We really want the CT scan results we get in a few weeks to show that the tumor is resectable and we will be a go for surgery and then transplant without having to consider further rounds of chemo. We know how important it is to resect all of this tumor because of the high relapse rate of NB, but we want to do it without further chemo. There are risks to prolonged high-dose chemotherapy and he is already showing some decreased heart function, so we really don't want to go there.

I think I may have set a new record for verbosity in CaringBridge journal entry. As always, thanks for checking in with us and for caring so much for Nathan and our family.