Travis officially started the rapamycin clinical drug trial this morning with his first dose at 8a. His dosage is not very much, so we use the long, skinny oral syringe. He saw the syringe this morning and was afraid that he was going to get a shot. I told him that it wasn't a shot, it was just medicine and he was relived. With the syringe being so small, I can fit most of it in his mouth and then quickly squirt the medicine in there. He didn't have a reaction to the medicine this morning nor tonight. In fact, he had more of a reaction from the black olive he tasted at dinner the other night.. I've been told that it's not good tasting. Then again, it may be totally by-passing the tastebuds. Either way, it works. He also takes a preventative antibiotic twice a day for 3 consecutive days in a week, we chose Fri, Sat, Sun. That also went good and I'm so thankful that he's cooperative for the medicine.
We had safe travels to get to N's hockey tournament. Let's go Capitals! It's nice that we are hopping into our "new" normal life so quick.
The next thing for Travis is a blood draw in 2 weeks. They are measuring the amount of medicine in his blood stream to see if it is within the target range. The 2 week wait is to let the rapamycin load into his system. The target range is unknown to us, we'll just know if he's in or out of range. From there, Travis will have weekly blood draws until he has 2 weeks of the medicine level within the range. Then we can go to blood draws at the end of each course (4 weeks), as long as the levels are within the range. We will be heading back to Salt Lake City for his appointment with his main geneticist in 4 weeks. Hopefully we can just have the monthly trips at the end of the first 3 courses and then after every 3rd course from here on out to the end of the study.
Thank you again for all your prayers, support, and thoughts. We are blessed to have such a great system of friends, family and support through all this.
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