Wednesday, September 10, 2003

Wednesday, September 10, 2003 9:55 AM CDT

Luke here...Just thought I would give a quick update. We are in the middle of a hectic week to say the least in prep for beginning transplant on Tuesday. Our clinic spent the day on Monday getting everything scheduled. Yesterday Nathan had a bone scan. He did well. This is a scary study for him as the camera has to be within inches of his face for about 5 minutes or so. He did well and our onc already looked at it and said it looked normal. The basics of the test is to check for met sites in the bone or other bone irregularities (like making sure there is no infection in bone before beginning transplant). Today Susan and Nathan are at the outpatient radiology center for CT scans of his abdomen and pelvis. Tomorrow things get nuts. He has rib x-rays, and echocardiogram, an ekg, a dentist appointment, and an appointment at his clinic. Hmm...I think I'm missing something on tomorrow's schedule. Friday we go to The Children's Hospital (TCH) Denver. He needs a nuclear medicine study to test his kidney function. They are scheduling a crazy day for us that starts at 7:15 with an injection for Nate. He will have numerous blood draws throughout the day. We will meet with the Child Life therapist, a nutritionist, his transplant doctor, a social worker, and possibly some other specialists that will be involved in his care. Hopefully we get a tour of the transplant unit. So, that is our hectic week followed by what we can hopefully make a good family weekend before checking into TCH for the long haul on Tuesday.

In the results arena, we do have the results of the head and neck CT scan Nathan had in the hospital last week. Everything is normal. They showed some congestion in his sinuses, but no mets which is what we were concerned about. He also got results from the test of specific acids (HVA and VMA) in the urine that are markers for NB. One of the tests came back normal and the other elevated slightly outside of the normal range. At diagnosis these were 10 and 40 times normal respectively, so this is good. Some foods can impact these tests. One of those is apparently vanilla and Nathan got a healthy portion of his Grandma Kathy's homeade vanilla icecream the night before his urine was collected. We are still waiting on an important test on his bone marrow aspirate. This is a test for NB done by "staining" the sample with an antibody that attaches itself to NB. Apparently the test (done in a lab in LA) didn't run properly the first time and that we should have results in a couple of days.

I was going to add a link at the bottom of the page, but I don't seem to be smart enough to figure out how to do that through this CaringBridge setup. I'll ask Susan later. In the meantime, I'll put the url here in the journal entry. This is a faq I found at the NIH on transplant if people are interested in the basics. Nathan will be having an autologous peripheral stem cell transplant (http://cis.nci.nih.gov/fact/7_41.htm).

So much for my brief update.