Treatment Number 5

We made it to Atlanta on Tuesday in record time. Not too many stops on the way up. Lori kinda paid for it though - she was pretty stiff and sore when we got there. She rested on the bed for a bit then we went to Jennifer's house for a visit (and a pizza). We had a nice visit but stayed a bit too long. She was pretty wiped when we got back to the hotel


Wednesday we went to see Dr. Tumlin. He was very dis-pleased with Lori's lab results. Said he does not know why the treatment is not working. Most of the time it does. He has had other people who have not responded but it is very rare.

He talked about what to do next. We will go for the 6th and final treatment - but no more than that. He will then put her on an experimental drug. He mentioned three different ones that he has used previously but didn't say which he would use. He did say that one of the he has used 6 times and all of the women responded. The drugs, as I understand it, are not necessarily new - they are just not "labeled" for the treatment of proteinuria. The biggest problem will be getting the insurance company to pay for it he says, but he will take care of that for us.

He also told us that he was leaving Emory Clinic. (Actually Jennifer said something to us first). We were shocked, hurt, angry, & confused when Jennifer told us. When we talked to Dr Tumlin about it we were reassured greatly. He is leaving to start a Lupus Nephritis Clinic at the University of North Carolina. He is taking his research assistant and another assistant with him. He is very excited about the possibilities and wants it to be the place in the country people go to for help with Lori's condition.

So - As it stands now we will go see Dr Tumlin for one more Chemo treatment and then take it from there. We will not be doing monthly trips anymore after July. We will be seeing him in North Carolina soon though. Might have to fly there - not sure. If it is every three or four months it won't be too bad.


Once we got to the hospital we had to wait for a bed (again). They didn't start Lori's treatment until 1:30. It takes 13 hours minimum - which put us leaving the hospital sometime around 2:30 a.m. The treatment went very much on schedule. No complications . . .except the IV not working at first - squirted blood and saline all over the place. Oh yeah - then there was the lady that came into the room about 5:00 and said "Mrs. Lyons" "Yes" Lori Said. "Mrs. Lori Lyons" she said. "Yes" again. "Hi, I just have a few papers for you to sign". "Ok" Lori said, "For What?" The lady then replied "For your transfer." WHAT !?!?!?! Transfer! We had no idea what she was talking about. Lori said "I'm not being transferred". With that the lady left . . . and we never saw her again.

We left the hospital right at 2:45 a.m. Got back to the room, grabbed a lite snack, Lori took some medicine, and we went to bed.

Lori did not sleep too well (I did). We got out of there about 12:30 the next afternoon. Lori did pretty good on the ride home. She got sick once at a rest stop near Ocala.

8:00 we were home.