Saturday, September 13, 2003

Saturday, September 13, 2003 6:46 PM CDT

Susan here...

Yesterday was a very long day. We left for Denver around 5:15 am. Traffic wasn't so bad at least. We arrived in radiology for the kidney function test and Nathan was injected with a radioactive isotope. He then had is blood drawn after 10 minutes and after 20 minutes.

We went upstairs to the oncology unit and he had his blood drawn and hieght and weight checked. Surprisingly he has grown an inch since June. He is now 40 inches tall. At 9:00 we met with the dietician. She talked to us about Nathan's diet and how food and nutrition would work during transplant. He will be on a "low-bacteria" diet. This means no fresh fruits and vegetable or yogurt. None of those things are allowed on the unit even.

After that we went upstairs to the bone marrow transplant unit for a tour. We had to wash our hands thoroughly and wear a gown but no masks. There are six patient rooms on the unit and it is hepa-filtered. There is also a playroom and a family room. Most of the time Nathan will be allowed to leave his room and go to these areas. There is also a room with a bathtub for him to bathe once a day. He will not have to wear a gown as a patient and can wear his own clothes. There is a TV with a VCR in the room.

After the tour we had a lunch break and took a walk outside.

We then went back for another blood draw for the kidney test and then back up to oncology. We met with the child life specialist whose job it is to entertain Nathan and help him cope. After that a nurse came in and took a sample of his nose mucous which did not make him happy.

We then met with Dr. Giller who is in charge of tranaplant at Children's Hospital. He talked to us about the different chemo drugs that will be used and their side effects.

After that we left the hospital and went to the Denver office affiliated with Nathan's local doctors. We met with Dr. Smith who oversees transplant of their patients. He and Dr. Giller will be working together. Nathan is their first patient since Dr. Smith started sending patients to Children's instead of a different hospital. Dr. Smith will be the primary doctor in charge. He told us he is going to Africa in the middle of it all however. He talked with us some more about Nathan's test results and the risks. He said there is a 5% risk of mortality from the transplant. Of course his risk is mcuh higher if he doesn't have the tranplsant - but it is still scary to think we are sending him off to do something that may kill him. He was very please about Nathan's kidney function which Dr. Giller said was super-normal. He has very good kidneys apparently. Kidney function is very important in transplant and so they were very happy about that.

Oh yeah - for logistical reasons it was decided Nathan will be admitted on Wednesday instead of Tuesday. We will probably go up Tuesday afternoon and check into the apartment and let Nathan see where we will be staying. He will begin chemo on Thursday and then have 4 days of chemo. The following Thursday (the 25th) he will get his stem cells back. That day is referred to as "Day 0" and the day following would be "day +1". We will be staying in Denver until at least day +30. Insurance hassles might keep us in Denver longer (with Nathan out of the hospital). We'll cross that bridge when we come to it.

So - that was our day. We still don't have any answers about the CT scan. Every assumes we will just go ahead with transplant. Dr. Smith says that since Nathans bone marrow cleared up completely and his tumor shrank and died that he definately responds well to chemo and so hopefully the transplant can do its job.

That's the update - we will update again in a few days.