Tuesday, August 26, 2003

Tuesday, August 26, 2003 7:00 AM CDT

Susan here...

We had a good weekend. On Saturday Nathan just wanted to be out of the house and so we spent most of the day shopping. Sunday morning we had breakfast out with my parents and both kids were very good and had a really good time. Afterwards we went to my parent's apartment and hung out for a little while.

Monday was a busy day. There is a long story about running around to different pharmacies trying to get Nathan his lugols solution which is a iodine solution he has to take prior to the MIBG scan. We finally got it. We went to the clinic and Nathan's white counts were still very good (we were surprised about this since he is off the neupogen) and his other counts were on the low side but they should be climbing on their own.

I looked at his CT scan with his doctor. It is much smaller and more calcified (dead). His doctor was encouraged by this and will be consulting with the surgeons and Nathan's transplant DR to figure out the next step. The MIBG scan is a piece of the puzzle we are still waiting on because if it shows more than a very minimal amount of disease Nathan will probably have more chemo. If we go ahead with surgery it will probably happen next week. They will open him up and then decide if they can get the tumor out or not.

After the clinic we went out for lunch and then to get his hearing test (via the hospital where I thought the test was and also where I ordered his CT scan to be put on CD so Luke could see it). So after we got to the right building Nathan had his test. Last time he was sedated and they measured his brainwaves to do it. This time he did it the normal way. He did a great job and the woman giving him the test said she'd never had a 3 year old who could do it that way. (raise the hand when hearing the tone) She said he responded like a 5 or 6 year old with it.

She didn't do the full spectrum of sounds since she didn't want to push it and because she felt she had good preliminary results. He does have high frequency hearing loss fromt he chemo. This isn't affecting his everyday life or speech at all so we are not really concerned. Frankly, his hearing can be fixed and we are trying to save his life so a hearing aid is not a big deal. They will just have him return from time to time to monitor him.

The nuclear medicine department did not get in the isotope for Nathan's MIBG scan. They had to move everything by one day. So he will be injected Wednesday afternoon and scanned Thursday and possibly rescaned on Friday. If the Thursday scan shows disease then they will do a short 5 minute scan on Friday to see if 24 hours later any disease shows. This gives them an idea of how active the disease is. The thursday scan will take about an hour and Nathan will be sedated.

Wednesday morning Nathan will go to the clinic and most likely have a bone marrow aspiration. That will be sent away for testing. It will probably take a week to come back.

So - that's the update for now. Please pray that Nathan's MIBG scan is negative and that the surgeons feel they can operate. We will keep you updated.