Hi everyone, a lot of you have been wondering how things are going to I thought I would post something to save me some time trying to get to everyone. We got into Chicago on Wednesday and met with her oncologist here. It was a great meeting and we found out a lot of information about the trial that we didn’t know or understand before. We are pretty new to this world of clinical trials and sometimes what we think we understand is not right. some of the things that we learned were:

     – the protein that they are looking for has never been tested for in Tammy and she had a 50/50 chance of it being there.

     -this is a phase 1 trial. We knew this but didn’t quite understand what that means. The two drugs that she will be given have been given separately (one to about 800 people and the other about 80 people) but never together. This first study will consist of two to three people. From what we gathered, Tammy will be the first, ie. the first human to have had these two drugs in their body at the same time. Wow, eye opener for us. Tammy will definitely be breaking new ground. In all honesty, it scared us a little.

Those were the biggest things we learned and Tammy was good with signing all of the papers and getting going. Thursday she was scheduled to have an echo cardiogram, a CT, and her biopsy. Echo went great and we moved on to CT, and as the saying goes, that’s when it all started. She went in and started prepping for CT like normal. They always do a CT w/ contrast on her, meaning that she has to drink barium before. All fine and good at this point, then Tammy says to nurse: should I be drinking this because I have a biopsy at one this afternoon (no food or drink before). the nurse looked at her and said, sorry sweety, that’s not happening today. Nurse starts calling around to figure out whats going on and we end of getting the biopsy scheduled for six Thursday evening. This included several people staying late for Tammy so that we could stay on schedule and make our flights etc. So we think great we will be back in five hours and get this show on the road. Tammy was a trooper. She had to stop eating and drinking the night before so she was definitely getting the munchies for sure, not to mention a little thirsty. So we show up at about four to start to prep. Life is good and things are moving right along. She gets her IV in ready to go and wouldn’t you know it her cell phones rings. It’s the doctor, she has some cavitation on her tumors and Docs that are doing to biopsy don’t like the risks of doing it in the evening when the hospital will not be fully staffed. She is at a greater risk of her lung collapsing with the cavitation present. Can we do it tomorrow(Friday) at one in the afternoon. What are you supposed to say. No, I’m sorry our flight leaves at 9 we are out of here. Tammy gets unplugged and dressed and we are out of there to get her some food because she is starving and I get on the phone to make a new reservation at the hotel and change our flights to Saturday because they don’t want you to fly until 24 hrs after lung biopsy.

So here I am now sitting next to her at the hospital. The biopsy is done, everything went good. She does have a little air around her lungs so they are taking a series of x-rays to make sure that more doesn’t get in there. The biggest fear now is that the lung could still collapse at some point, but everything is looking good right now, BUUUUUUT, they think we should not fly and drive home. So at some point here I am going to have to find a rental car place and get us a ride and also cancel our flight. Southwest is probably going to put us on a watch list because we have changed our flight so many times in 24 hours.

Tammy is feeling good right now and the are getting ready for the next x-ray. If there is more air then she could possible have to stay overnight with a chest tube. If no change she could possible leave to the hotel. I will comment when I know what is going to happen for sure.

This has been a frustrating trip so far but we really have to keep it in perspective. We have been very lucky up to this point that everything has worked out as far a scheduling is concerned. The staff at Northwestern has been great. Everything that they have done/ changed has been for the benefit and safety of Tammy. I cannot be angry at them for that. After four years we are pretty good at “going with the flow” as I like to call it. We are very thankful to be here and getting all of this done. The next seven days are going to be pretty stressful as we sit and wait to see if this mystical protein is present, but if this is what Tammy is supposed to be doing, then the protein will be there. If not, something better is out there waiting on her. I have no doubts about that.