Thursday, February 24, 2011

MD Anderson Visit

Blake and I just got back from Houston after visiting with MD Anderson for a 3rd opinion. Even though we got an opinion from St. Jude, we felt since we were given the opportunity to go down to MD Anderson, we should go. Our appointment was at 8:00 am which started off with registration. Upon arrival we were very astonished by how enormous the facility was---it was pretty much a city within a city! When we got to the 7th floor we were greeted by very nice and personable personnel. Sitting in the waiting room really opened our eyes on how fortunate and blessed we really were to receivethe test results we did. There were several very sick children in there with their parents that made us realize how fragile life is. While sitting in the waiting room an outpatient specialist that is ahead of the child life program there introduced herself and said if there is anything we need let her know and here is a pamplet about the child life program. We definitely felt very welcomed!
     When we got called back to the room we were introduced to her clinic nurse that was assigned to her. She said how excited she was to be working with us and took Reagan around to all the nurses and showed her off. She then took us to the room and checked her vitals and went over the paperwork we filled out. The nurse practitioner, Peg, then came in and we discussed how everything started and what has been going on. She examined Reagan from head to toe to make sure she was growing like she should. Peg also gave us the opportunity to ask her any questions while we were waiting on Dr. Ater.
      When Dr. Ater arrived she introduced herself and told us that she had reviewed again over Reagan's scans and wanted to show them to us. On the computer she showed us the MRI and the MIBG and pointed out to us the tumor and the location of it. She also did tell us that she could see a small sign of calcium deposits on the tumor which could mean signs of the tumor dying off.  It was very awesome of her to show them and explain them to us. Dr. Ater also examined Reagan thoroughly for about 5 minutes. She said how she looks really well and is developing great. She then explained to us the clinical trial that started in Jan. 2001 and ended Jan. 2011 and how she feels this is the best treatment for her right now. This trial consisted of 89 kids who are all still alive today. The trial was based on a wait and watch theory which consists of monitoring the tumor and doing tests periodically to see if the tumor regresses. Of the 89 kids, 4 of the kids opted for surgery before getting started, so 85 kids did the watch and wait. We felt very relieved to get this information and to know how successful it was. It is very awesome to here that the trial had a 100% success fate. She did explain how we would follow the schedule of a 90 week investigation of her tumor. Dr. Ater did say it could take even longer then that for the tumor to be gone. Reagan will have frequent sonograms and then at least 2 more MRIs. It will be a long and stressful process on Blake and I, but we feel this is the best step to take for Reagan. We would love for anything to not have surgery.
     After hearing MD Andersons recommendation and that it matched up with our 2 other opinions, we feel very comfortable to say we are going to follow the clinical trial. We will do all our tests here at Cooks and send them to MD Anderson for them to be reviewed. If for some reason the tumor doesn't regress and we have to have surgery, it will be done at MD Anderson since Reagan is now a patient there. Again, Blake and I feel so blessed to have family, friends and people who we don't know reaching out and praying for us. Our pastor preached on Sunday how we all have to expect the unexpected and to follow GOD's playbook---we are fearing NO evil! Reagan now goes on Tuesday March 1st for her next sonogram at Cooks to see how the tumor is doing and we will let everyone know those results that day. Thanks again for all the prayers and for following Reagan's journey of conquering neuroblastoma.

1 comment:

  1. Good morning! I hope you are having a blessed day! My name is Brianne Banning and I heard about your trial through a friend of mine, Mary Ann Harrold who knows your grandma Nancy. My daughter Baylee went through the great battle with neuroblastoma almost 4 years ago at the age of 6months. She is a very healthy almost 4 year old! She had stage 4 so we traveled from Wichita, KS to Cook Children's for a stem cell transplant, I remember Dr. Granger all so well. They took great care of us...a wonderful place. I am excited to hear about the "plan of attack" for Reagan. Please know I will be praying the tumor disapears! Pigs fly because God makes them! Matt 19:26