MEK Inhibitor Trial Assessment - Day 2

Funny how time "warps" in a hospital setting. Today brought the second day of testing for Travis regarding the potential enrollment on the MEK inhibitor (AZD6244) clinical trial. Thank you for the prayers, he rocked his non-sedated MRI!!!

We chose to participate in the optional cognitive testing for the MEK inhibitor clinical trial. During the phase I trial of the same medicine, a patient's cognitive testing improved 15 points across the board. Given the results of T's neuropsych testing earlier this year, the decision to "opt in" was an easy one. We both filled out evaluation forms and T did some testing on the computer. Two more sessions of testing will come if he is enrolled on the study. While he woke up bright eyed, you could see his energy fading throughout the morning and day. He liked the neuropsychologist well enough, but things changed for the better when he heard she had been to a NASCAR race at Bristol.

He played on his iPad to pass the time until his MRI appointment time, this greatly helped keep his mind off of not eating before the MRI. (Primary's lets him eat whenever for unsedated scans.) Another difference from Primary's, T had to change into "paper" clothes to wear during the scans. He wasn't sure about that part, but we both got a huge laugh when the pants they gave him went from his toes to his neck. :)

Shortly after checking in at MRI, T struck up a conversation with a gentleman also there for MRI imaging. They swapped favorite sports teams and talked a little NASCAR. We ended up seeing him later at the Pediatric Clinic (he's there for his daughters) and at the Children's Inn.

Pre-MRI silliness...note the huge pants and shirt

Travis went back to the MRI machine and let the tech know that he wanted to listen to music on his iPad (no movies here either), his legs "taped", and a blanket around him. So proud that he is comfortable asking for things in the medical world. T entered the MRI machine and less than 30 minutes later the imaging completed. So proud he made it through this non-sedated scan without a movie. :)  He's rocking it! Thank you so much to all those who prayed for T to do great on his MRI!!! He asked the techs if they had a snack, they only had really old food. Fortunately a candy stash at check-in saved them, M&Ms were a good-enough replacement until we could get to Oreos.

Travis listening to "Planes: Fire and Rescue" music

We met with one of the research nurses for the study and she took us to meet Dr. Dombi (she performs all the volumetric analyses on T's MRI scans). I had asked to meet her after the MRI and for her to meet Travis. I think it helps putting a face to a name/MRI image. I had met her at the NF Forum in New Orleans back in 2012, we both teared up when we realized who each other was and how our lives have crossed paths.

Travis and Dr. Dombi

Dr. Dombi pulled up the scans while we were there and she felt the tumor remained stable after a quick look. The volumetric analysis will be done in the coming days. She has a great feel for his tumor as she's looked at it for over 5 years. Travis can still enroll in the trial with a stable tumor, one section is to see about shrinking stable ones.

We headed back to the Peds Clinic for Travis to practice swallowing the capsules without medicine. He was more than done by this point and protested trying to swallow the empty capsules. The good news, he could swallow the capsules...he will need to practice more over the weekend. He tried again tonight with success coming much faster. :)  Long days of appointments on a fatigued kid makes for interesting days.

Overall his initial lab work and exams look great. They are keeping me updated as we go through this process. During the consent review meeting on Thursday, I joked (seriously though) that if they had bad news to deliver, I should see a chocolate bar in their hand so I can prepare. ;)  Bad news does go better with chocolate.

We will spend the weekend sightseeing with friends and back to more exams and tests on Monday with EKG, physical therapy, occupational therapy, and photography.