Thursday, November 20, 2003

Thursday, November 20, 2003 2:51 PM CST

Susan here..

## just an updated note to the entry below -I forgot to say that this morning Luke noticed that Nathan's eyelashes are growing back in. We were very excited by that!##

Well a couple of long days. Yesterday Nathan slept in until about 9:30 (he had not slept well in the night) we hung around and then we went to my aunt's apartment and she watched Nathan while Luke and I had lunch and then we sat around and talked. It was very nice and we hated to leave but we needed to check into the Ronald McDonald House. The room is very dirty. We were kind of appalled and could not give Nathan a bath because the bath mat had tons of mold and mildew underneath it. The carpet is filty as well. They had a catered dinner so we ate and then put Nathan to bed. Today we got up and I asked Nathan if he wanted something to drink and the mere though made him throw up. We really don't know why he is so nauseous. We went to the clinic at 8:30 this morning and spent a lot of time sitting around and got back around 3:00 this afternoon. We met with the surgeon. He explained the tumor's location and showed us the scans in detail. They also explained that he will go across the street to the pediatric ICU in another hospital afer his surgery. He will have a chest tube (the surgeon likes to go in on the patient's side to get a better view)a nasal tube, an epidural, a foley catherter (for urine) and an arterial IV (to check blood pressure). We feel good about him doing the surgery and he definately is going in to try to get it all versus getting all he can while being very safe. This means it is a riskier surgery for Nathan but we feel it is the right one and the right surgeon.

We also met with a patient insurance advocate who is helping us with insurance (we don't kno the current stauts of that right now). We met with the social worker and also an oncologist on the neuroblastoma team. The study doctor poked his head in to introduce himself to us.

They are going to do a bone marrow biopsy and aspiration while Nathan is under during the sugery. After he recovers they will do the rest of the tests for the study. The surgeon thinks Nathan will be in for a week or so. After he is released from ICU he will go back to sloan-kettering and they are opening up a new inpatient ward this weekend so his room should be nice at least.

Luke went out to buy cleaning supplies and we are going to thorouhly clean the room. We are surprised they don't have volunteers to clean the rooms at least. I am sure they could fine some. It is a pain for us to have to do this after being at the hospital all day.

It is a very busy clinic there will not enough seats for all. They have a nice playroom that is staffed and so Nathan spent a lot of time in there and we sat in the waiting room.

We did get a break for lunch and ate at a nice cafe.

Well - I might add more later because I know I am missing something.

Oh yeah - the surgery will be around 11:00 and they will have nurses go in and check on his status every two hours and let us know how it is going. We expect it to be several hours of surgery but who knows if that is 3 or 8.

We'll update sometime tomorrow. Please keep Nathan in your thoughts.