Travis is officially enrolled in the rapamycin clinical drug trial. He did good during the blood draw this morning, especially considering he was hungry and not wanting to be there. All of his labs came back good and they sent the info off to the trial sponsor location (University of Alabama Birmingham) for their check over things, approval, and number. We ate breakfast at the hotel and then moved our stuff to the Ronald McDonald House since we got for the rest of our stay (basically tonight).
Travis' exams are done at the Hematology/Oncology clinic at Primary Children's. Just a few seconds in there will make most anyone grateful of the challenges they are facing, especially seeing kids there for IV chemo. We met with Dr. Carey and later Dr. Stevenson joined us for the initial exam, both going over Travis' medical history and a thorough physical exam. They were able to see T's lab results and knew that all they needed was the approval from UAB for us to continue. Thankfully we brought some snacks to munch on, I think we got out of there at 1:30p and headed over to the University Hospital (where the research group is located) to wait on the approval. During the exam it was interesting to hear the 2 doctors conferring with each other about Travis' case. Travis has tibial dysplasia and femur dysplasia, they don't see that with the femur too often. They also think that the dysplasia and the plexiform are not directly related since they see people with tibial dysplasia without plexiforms. Basically they said was odd that he had both the dysplasia and plexiform on the same side...that's coming from national/world specialists on tibial dysplasia.
Sometime around 3p we got the word that Travis was formally accepted into the clinical trial and we could go pick up his medicine. That's a strange walk to take, luckily the research coordinator is very nice and personable. Funny story in getting the medicine, one of the pharmacists has a good friend that works in the Sacramento Weather Service Office...we have 2 friends that are in that office. Small world.
After we got the medicine, Travis and I met up with a wonderful lady from church that "happened" to be in Salt Lake City with her husband for his conference. She treated us to ice cream and it was nice to visit with a familiar face. Travis and I headed over to the Ronald McDonald House to get the lockbox for his medicine, it has to be refrigerated. We were treated to a wonderful spaghetti dinner and Thursday is craft night. Travis got to make a cool coloring pad and they even gave him the Lightning McQueen markers. Yup, he was happy about that one.
Travis starts the rapamycin in the morning, we decided that 8a and 8p would be the best times for our family. He's to have blood work again in 2 weeks after the medicine has had time to get into his system for a while. We'll make visits back to Salt Lake City after every course, 4 weeks, for several months.
We can feel the prayers and support for us out here. This is a new page in T's life, as well as our family.
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