Wednesday, August 27, 2003

Wednesday, August 27, 2003 9:09 PM CDT

Susan here...

Well another very long day with lots of information. We are exhausted but I will try to detail it the best I can int he order it happened.

Nathan's doctors called yesterday to ask him to come in later in the day to do the bone marrow aspiration. So we changed plans to do that at 1:00 and have them put in his IV for the injection at 3:00.

We went in and Nathan's doctor told us that he found out that the bone marrow sample needed to be fedexed by noon the same day as it is taken and so we couldn't do it. After some talking we decided to wait to see if Nathan would have surgery next week and do it then. We talked some more about the cat scan and how he thought the kidney still looked like it would have to be removed and how they wouldn't want to do that until after transplant. There was much discussion about the risk of going though transplant with only one kidney versus the risk of not removing the tumor until after transplant and there are no good answers. Also - the official radiologist's report for the cat scan showed only minial shrinkage whereas we all thought it was a lot more than that. We talked at length about

His doctor went off to call the surgeons and to our surprise the surgeons were very pleased with the cat scan and felt they may even be able to save the kidney. They had already started trying to schedule the surgery for next week. Needless to say that was some great news.

Next it was time to place Nathan's IV. Since he was going to get int he car and go to the radiologists afterwards they wanted to put it in his hand so he didn't have to keep his elbow straight the whole time. After 45 awful minutes and 5 tries we ended up putting it in his inner elbow after all. It was a truly horrible experience. Nathan was so upset and scared and insisted on watching them each time and screaming for them not to put the needle in him and not to hurt him. Everyone felt so bad and the nurses are worried he won't like them now. After it was finally all over he was fine (but starving due to his eating being restricted in anticipation of the bone marrow aspiration) and even though we were already very late we had to go to the grocery store and get him a banana to eat. We finally made it to the radiologist and had to wait around for quite awhile and then he finally got his injection and we went home.

We got home and had a message from the surgeons that Nathan's surgery will be Tuesday morning. I called his doctor to tell him and he was very pleased. He had talked to the transplant doctor this afternoon and they determined that it would be best for him to have his surgery and then have another round of chemo to kill off any leftover pieces of tumor. This is a concern that Luke and I have had for a long time when they had been talking about other options that didn't involve more chemo after surgery. The chemo they give him will involve one new chemo drug that will replace the one that is damaging to his heart. After chemo he will go into transplant after about 3-4 weeks. This would put transplant to begin somewhere in the first two weeks of October.

Before Tuesday we still need to determine if the surgeons will take the kidney with the tumor if neccessary or leave the tumor there if they can't save the kidney. Nathan's doctor plans to talk to the tranplant doctor more about this.

Nathan is still going in for the MIBG scan tomorrow. If it is positive for cancer it may change all of the things I just wrote. Nathan's doctor is very hopeful it won't be. We should have a good idea by Thursday night because they will need to rescan him Friday if they see anything in the scan. If not - he won't have to go back in. They will take his bone marrow during surgery Tuesday and send it off for testing which will take about a week.

Friday he goes to the surgeons for a pre-surgery physical. Then we will have the weekend to rest a little before surgery.

We will try to update tomorrow night with any news. We had so much information today that we are overloaded so I apologize if this was confusing in any way.

All in all - we are very happy with the surgery being scheduled and just want to get this scan tomorrow over with and then we can enjoy our weekend.

By the way - if you have any questions feel free to email us at the link on the page and we will try to answer them in future journal entries as I am sure that many others might have the same types of questions. We appreciate your keeping up on Nathan.