Friday, August 29, 2003

Friday, August 29, 2003 8:58 PM CDT

Luke here. Too much to try to relay. I'll just try to go chronologically. Let's see. Where did we leave off. On Wednesday I think. Thursday morning was to start off with an MIBG scan. This is a long study where stillness is important, so Nathan was sedated. We showed up plenty early to the outpatient radiology and hung out for a few minutes before they were ready for him. Nathan was sedated and the scans began. They took two different scans. One is a 3d image of his torso and the other is a whole body scan from head to toe. The purpose of the study is to show areas of neuroblastoma throughout his whole body. One of the scans took about 32 minutes and the other 37. It is pretty long, but Nathan is out for all of it and we were in the room. We could actually see the image as it was processing which was a little nerve racking. We were prepared for Nathan to come off of the drugs badly as he usually does, but he came off in a pretty good mood. He was wobbly all day, but he wasn't too upset. This morning we had an appointment for a brief exam at the surgeons' clinic. We met with the nurse practitioner and it was short and sweet. We began feeling a real crunch in terms of getting all of our doubts and concerns addressed by the end of the day since we were approaching the end of the day on a Friday of a holiday weekend with Nathan's surgery scheduled first thing Tuesday morning. We have a lot of confidence in each of Nathan's doctors individually, but there were some very important decisions about his surgery that we felt had to be made as a team (with our input too!). We needed all (primary oncs, transplant docs, surgeons) on the same page and weren't getting any information that seemed like they were there yet and we weren't understanding the decision making process. We had a phone call with his primary onc who promised to call around and poll the other docs. We got a call from one of the surgeons. That was an extremely frustrating conversation for Susan, but she ended up with some good information. Later we got a call from our primary onc with the information we needed to feel comfortable and the assurrance that all of the doctors had come to consensus together as a team. It was an extremely frustrating afternoon, but we are all set and happy enough with the decisions made. The upshot is that they will attempt to remove the entire tumor, but won't take the kidney. This was the main point that we needed clarified. There is a chance they can't get the entire tumor and leave the kidney. All of the docs think that he needs the kidney for transplant so if they can't take all of the tumor without taking the kidney, they will debulk as much as they can and biopsy whatever the leave attached to the kidney.

Lets see. What else. The MIBG results were good. He did not show uptake throughout his body like he did in his previous MIBG. The disease that was in his arm, hips, legs, and orbital areas did not show disease. There was something that showed up in his head that did not show up before. It wasn't clear if it was tumor uptake, but we and the docs don't think it was. He will have another CT scan of his head to make sure. It could have been some uptake in his sinuses or something like that. The docs don't seem too worried, and if it weren't for this question area the results of the MIBG would be very positive. Our primary onc also got the results of hte hearing tests back. Nathan's hearing loss is at lower frequencies than he would have hoped or expected. We'll probably be retesting soon. We knew there would be hearing loss and that it could be down in frequencies that will or could impact his speech or require hearing aids in the future. We are absolutely fine with this if it means ridding his body of this cancer.

I know I'm leaving something off. We are totally exhausted tonight. It has been a long week. We'll be updating though with information as we get it or remember we left it out. Our plans for this weekend are just to try and have a good and normal weekend before the surgery and long week get started on Tuesday.

Thanks for keeping us in your thoughts and prayers.