I heard from the research coordinator late this afternoon and Travis' rapamycin level were low again this week. :( The study increased his dose from 1.3 to 1.5 starting tonight. His next blood draw will be Friday, March 25th and then he'll have the end of course 5 blood draw the next Friday. Hopefully the end of course 5 draw can also count for the 2nd consecutive week of his rapamycin blood level in range, meaning he'll be back in range with this new dosage.
Sometimes this feels like a roller coaster ride with all the ups, downs, twists and turns. These bumps are a part of being in a clinical drug trial and not unexpected. Still, it's hard thinking that your kid could benefit from taking an immunosuppressant and qualified for this trial based on the rapid growth of his plexiform. However, we're at this place and the great news is the plexiform growth has slowed down. While the path wasn't easy to get here, we're here and in a very, very good place for Travis medically...and for that we give thanks to God.
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