Catching Our Breath

For those of you waiting on this post, I am so sorry. It took us a while to get here, get settled in and then the first appointment was here before I knew it. Once I finally got around to blogging, I couldn't get my computer on and it took Stephen and I all night last night and about two hours this morning to finally get it up and going. Nothing like speaker phone computer training from your husband for hours! Fun..Ha!


We arrived Sunday evening around 9 pm and were greeted by a personal driver at the airport arranged by MD Anderson. It was really nice and he even had a new Ipad2 that I got to play with on the 30 minute ride to the hotel! Our first appointment was at with the business office at the hospital Monday morning. That went just fine and then we were off to meet Dr. Tsao. She and her staff were wonderful and explained the whole process to us. She went over everything she knew about dad's case (without notes I might add!) She started with the original tumor diagnosis in 2008 all the way up to the last treatment of chemo just last week. She had several questions about things, but otherwise didn't miss a beat and that was very impressive. She explained to us that in order for she and the team of doctors to make any diagnosis or treatment options he must see several doctors and have several tests run. The appointments are to be made by the scheduler and the plan is for them to be done before Thursday because the team of doctors will meet Thursday night. She indicated that she didn't think there could be any more radiation to the neck, but possibly may need some to the spinal areas in question. Most likely surgery would not be an option either, but she wanted both the radiologist and a surgeon involved. I am very happy that we will be seen by them all and they will offer their opinions to one another and review the scans together before presenting the plan to us. It is so nice to know that there is a team working together. It is even more impressive how every doctor comes in to see us knowing his case and we don't have to repeat ourselves over and over.

She then set us up to see a nutritionist. (Dr. Tsao was concerned he was so "skinny") She reviewed the supplement schedule that mom has been following and agreed it is plenty for him and he should gain weight on that regimen. He was instructed to eat by mouth as he wants to and to try and drink more water.

We then met with a wound care specialist. She looked over dad's neck and told mom she was doing a good job taking care of it. She gave us a few tips and said that the surgeon may have some other tips for us once he saw it.

Next, we were sent for initial bloodwork and then we were done for the day..All of us went straight to a much needed nap!!

Our schedule has not worked well for us so far, but they nice people here are working on that for us. The original schedule has us doing nothing today or Wednesday. They did a little switching around and we had an appointment with the radiologist, Dr. Gunn today at 1:30. He was very nice and like Dr. Tsao knew dad's whole case without notes! He went over the extreme risks of radiating the neck area again because of the jugular vein possibly bleeding out. (we have been told that before) He did say that he had not received the full picture records from UAB and when he did he would be able to give us a more precise opinion. He too went over the spot on the vertebrae and asked dad several questions about pain and examined his neck and spine. In his opinion (before having seen the pictures/scans from UAB) he said there is a SLIGHT chance of more radiation and that if the MRI shows the spinal area to be stable and not causing any problems he might leave it alone for now or until it shows any change. Again, this is all just speculation until the current scans are up and the team has met. He was VERY nice and genuine. Did you know that doctors wear cowboy boots in Texas? :0

We are scheduled to see the ENT surgeon tomorrow sometime. They haven't called us with the appointment yet, we just know that it is Wednesday. His MRI and CT/PET are scheduled for Thursday. That will be a long, hard day so please pray for that! Now for the frustrating part. The original phone call we got from MDA told us to plan on 3-5 days for new patient consultation. Well it turns out that at least in the Head and Neck department it is always 7 days minimum because the doctors are only in the clinic on Monday. Which means that by Thursday afternoon we will have seen all the doctors on the team and had all the tests/scans done that are requested. The team will meet Thursday evening and our appointment for all the results and plan of action is the following Monday at 10 am! This is not sitting well with any of us (especially dad!) because that is a lot of time away from home just waiting and not getting anything done. I have a call in to the patient advocate who has been assigned to us to help try and work something out. Please pray that all of it falls in to place as it should.

I think that is all. Most everyone here is so nice and so helpful. The shuttle gets us to and from the hospital promptly as well as to Kroger and nearby restaurants for dinner. And YES everything is BIG in Texas because our dinners have been more than filling with lots of leftovers to bring back to the room.

So, we will catch our breath tomorrow with only the one ENT appointment and prepare for scan day on Thursday. We know that you are all praying for us and we are so grateful. I'm still praying BIG and I still want to "knock their socks off" with how he comes through this! He is really weak and really tired so pray for endurance and strength as well.

Love to all,
Michelle