Friday, September 26, 2014


My support group running in the color run. Love each and every one of this ladies.

Maryland was short lived for us. We got there late Monday night and spend all day at NIH on Tuesday. We met some incredible people and doctors there. Everyone was very pleasant and helpful. The only downfall was the waiting. My appointment was scheduled for 12:45, we didn't actually go back and see the fellow until 2:00. After she talked to us and did an exam she went into a meeting with the doctors to discuss my situation. The team didn't come back into our room until 4:30. At this point I thought we would be spending another night in MD because our flight was scheduled for 7:50 and the airport was at least an hour away and it was rush hour. We didn't leave the hospital until after 5 and had to go back to the hotel. We got a taxi from the hotel to the airport but he didn't get there until at least 5:45. But the good news is that we made the flight with about 20 extra minutes to spare.
Kyle was pretty excited that we got to watch baseball on the flight home.

The trial I will be participating in involves me just taking a pill called Cabozantinib every night. I have to to NIH every two weeks for the first 4 months for a check up. After 4 months if everything looks good then I will get to go back up there every month. I will get scans every 2 months up there. This pill has shown improvement in patients with spots in their lungs but they don't have a lot of information with patients that have spots in the liver. So hopefully I can be the one that it shows improvement in both the liver and lungs.

Once again the doctors had to inform me that my case is very rare. So I am hoping I can help them learn more about it and they will know how to treat people in the future that may have this same rare form of cancer.

I am excited to get started. I was relieved I didn't have to spend a long period of time up there and that I can do this all at home. I will just become more of a frequent flyer and will get to know Maryland like we did Houston. NIH will help with all travel arrangements and they were actually going to see if I qualified to stay in the Children's Hotel while I was there but they thought the age cut off was 26.

Right now we are planning on going back the week of Oct 6 to get scans and then see the team on Oct 7 and will get started after that.

Thank you everyone for the thoughts a prayers. My family and I really appreciate it.

National Gymnatics Day was Sept 20th so I had to do my yearly handstand. If only took about 10 tries to actually get a picture with me all the way up in a handstand

1 comment:

  1. Nice form! I think the tattoo should have made this post, love you!