Monday morning brought a return to the exams, assessments, and tests for eligibility in the MEK inhibitor (AZD6244) clinical trial. Another full day at the Clinical Center stared us in the face.
Travis started the day with an EKG, the actual test lasts around a minute while placing/removing the stickers and wires takes several minutes. We then spoke with one of the neuropsycholgists regarding how to keep Travis motivated while taking the MEK...great ideas and we will probably create a modified donut/Hot Wheels plan.
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| EKG time |
We spent the remainder of the morning at rehab medicine for the 6 minute walk test and an occupational therapy peg-board evaluation. The 6 minute walk test is to obtain a baseline to see how far Travis can walk in 6 minutes. We decided his cane would provide the most accurate assessment for his walking, he can "cheat" using his walker/gait trainer. Travis walked 319 meters in the 6 minutes.
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| Start of 6 minute walk |
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| Near the end of the 6 minute walk |
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| Waiting for the doctor to bring the measuring wheel to determine the 19 meters distance |
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| OT pegboard assessment |
After lunch Travis had another set of vitals taken as his blood pressure and heart rate were elevated on Thursday. These numbers showed a little lower than Thursday. We learned that he does not like to stand on his left leg while having his right leg on mom when we tried to get his height on each individual leg. Photography came next for pictures of his tumor before starting MEK, T was done with the entire exam/test/assessment process by this time and let us know. Once he finally started the pictures, he had a great amount of fun.
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Picture with Andrea Baldwin, PA, Travis, and Marielle, RN
They are part of his NIH medical team |
We happily walked back to the Children's Inn where T participated in Learning4Fun for some school reinforcement and other activities the remainder of the day. Travis put together Thanksgiving themed arts and crafts, so glad he was able to do something fun and artsy for Thanksgiving since he missed any activities at school. The Children's Inn also had a special vistor come in and discuss about how bugs in the water can be a sign of good water. Travis had a field trip earlier this school year on this same topic. Great reinforcement.
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| Travis and Zilly, the Children's Inn therapy dog |
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| Travis crafting his turkey |
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| Final turkey product |
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| Travis enjoying the bugs in the water lesson |
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