Thursday, October 30, 2003

Thursday, October 30, 2003 7:04 PM CST

Well today has been a very stressful day. Luke left yesterday afternoon with Julia to go home and get things ready. This morning Nathan had his MIBG scan. I woke him up to take him over and he couldn't have any food or drink so he was quite upset about that. We went over in the wagon and it was icing/snowing and not very pleasant (we have no car up here). Nathan had a huge fit when he saw the scan table and screamed for quite a while. He was finally sedated and they did the scan. We took him to recover in a bed right under a light that did not turn off and so he had a big fit about that because he still wanted to sleep. I got him in the wagon to leave and we were told they needed to to another scan real quick and so we had to put him back up there and he wasn't happy about that. After waiting another 20 minutes for the scans on CD we went back to the apartment. He wanted to go back to bed and so he slept until it was time to go to the clinic. I had to wake him up to do so and he was MAD about that. I tried to put him in the wagon and he wouldn't stay in. He was still sedated and so very unsteady basically drunk-like. I called over to the offices and asked them to drive us to the clinic and they did. HE screamed the whole time and tried to make me stop carrying him.

At the clinic he kept trying to escape out the door but he couldn't really walk and was stumbling around and I had to keep getting him back on the couch. They finally put us in a room with a bed and he calmed down and went to sleep. He slept for about 2 hours and then we woke up cranky and mad again and had his exam. His counts are great. We got home around 4:00 or so and he has been OK but is still showing effects of sedation. He is currently playing on my bed.

In the midst of this day Luke and I have been trying to figure out what is happening with insurance and surgery. First off - the doctors agree that Nathan needs surgery. He will probably have it very soon. The problem is that the remaining piece of tumor is in a very difficult spot and looks to be very difficult to resect. We would really like to take him to New York for the surgery but it will be difficult to get our insurance to cover it - impossible probably in the time period we are talking about. The surgeon in New York is the best at removing neuroblastomas and probably does more than any other surgeon and does the cases the other surgeons think they cannot do. Luke and I will try to meet with his surgeons in Colorado Springs on Monday to sit down and see what they have to say. It is unlikely we will have them do the surgery. They already had their chance but we do ned to talk to them anyway to understand more about what is going on. I suupose we may have the surgery in New York even if we have to pay for it ourselves. I don't know. How are you supposed to make these kinds of decisions about your child's life????

We don't know how this surgery may affect the antibody trial. We have sent off an email trying to figure that out. We are still working on insurance for that. If it is deemed experimental then we probably don't have much of a chance.

Somewhere in all this radiation needs to take place.

Oh yeah - and his tumor did light up on the scan and there is still a spot in his facial area that is kind of a mystery.

So - after all this I am the most stressed I have probably been ever in my life. I hope we get a few answers tomorrow because this weekend will be nothing but stressing over all of this without being able to do anything about it.

Tomorrow we head back to the Springs. We have a lot of cleaning and packing which I thought I could do today but couldn't. We are trying to get back to Colorado Springs before the end of the business day to deliver nathan's MIBG scan to his doctors.

So that is the update. I hope the next one is better.