Drove down to Houston early this morning and made it down pretty early, so we checked in to Hotel and then took a shuttle down the street to MD Anderson. There were hospitals wherever you looked.
MD Anderson is huge, there were buildings after buildings that all belong to MD Anderson. We went to the Main building and walked inside and kind of didn't know what to expect.
There were people everywhere, lining up for valet, information, elevators and coffee shop. Our first appointment was registration up on 6th floor followed by nurse assessment and then meet with Dr. Fayad.
Dr. Luis Fayad & his nurse Amira Pugh
There 6 different set of elevators to get upstairs and to different places in the building. Its just amazing how large it is.
It was overwhelming seeing so many sick people, wherever I looked there were people and I just knew that most of them were very very sick. Thankfully not many kids in this hospital, the Children's Hospital was right next door though. It is almost like MD is a hospital city indoors. Imagine the movie V when all the aliens are inside the big mother ship, that is how it felt being inside MD. Traffic of people walking everywhere. Some with several bags of IV/Chemo, some in wheel chairs, Aj saw one vomiting in the lobby. People are constantly moving around from floor to floor to different rooms for different things, lab work, scans, xrays, appointments, nurses, treatment.
All it all, you arrive, see the nurse then the doctor. He decides what tests he wants done and then you get an appointment sheet where it says what type of test you are having done, what time and where. Then you start going around to the different floors to the different departments and 'check in' - sit down in waiting room and wait for your turn. When you are done there you walk to the next one and so on.
Our were:
Registration
Nurse assessment
Doctor Fayad
Remove PICC line
Chest Xray
Blood lab work
We brought a CD from Seton to give to Dr. Fayad that we all believed to be the slides from the scans and all essential info for him. But it showed out that all it was, was 4 chest xray pictures. So not a whole lot for him to look at. He read the Dr. notes from Seton and asked a few questions and then examined Aj. He weighs 150.3 lbs today
First he said that he wanted to do another bone marrow biopsy because he wanted to see what it looked like to make sure of the diagnoses. But while we were in the office, Dr. Medina - Pathology called and said that he had looked at Aj's tests and he was confirming Anaplastic large cell lymphoma. So that is clear.
So no need for a biopsy right now, probably after the second Chemo to see how things are going and how the body is responding to treatment. Dr. F said that he still wants Aj to do a P.E.T scan and a C.T scan here in Houston. Although he has had a C.T scan, they like to do their own. So, its a little bit like we are just double checking everything right now for Dr. F to see with his own eyes what is going on and then give the final word on what treatment is best for Aj. Either stay on CHOP or change it.
So we did tests today, driving home in the morning and then we go back down on Thursday just for the day to do the scans and then back home and wait and see what Dr. F comes back with.
Sorry for not having a lot of news but we have to let Dr. F do things his way and I can understand that they want to run their own tests since every doctor have their own way of doing things.
I would say next week we will have word on if the protocol-treatment is going to change or not. It just feels good that we are here and they are doing all they normally do and we will get the experts advise on everything. I mean people get treated from all over the world here, we simply are in the best place possible.
Aj has walked around the whole day with me, from appointment to appointment. A real trooper! The only thing that has bothered him today is his back, its really sore in the lower part. We mentioned this to Dr. F and he said it could be a side effect from Neulasta. I did some reading and it appears that people do get bone/joint pain in back, neck from the shot. Some take Arthritis medicine for it, I will ask the doctor next time.
Fidel, the nurse who took out the PICC line was hysterical. Such a laugh :) he was being a little sarcastic but at the same time so funny. He took off the dressing and went - oh my lord! but of course when you look at him, he would have a smile on his face. It took Aj a few seconds to figure out he was joking. It cracked us up!
I will take pictures of the Scans info sheets that I got so you can read what they are about.
Back to Austin tomorrow!!! :)
No comments:
Post a Comment