It has been 2  years since the last post, but we figured maybe some friends and family still have this marked for updates.  If so, we wanted to reach out again.  Clay has been in Childrens’ National Hospital since Thursday morning for an array of issues which combine to form a “failure to thrive”.   He is experiencing nausea, vertigo, neuropathy and a palsy shake.  He has lost 10 pounds off his small frame due to a reluctance to eat because of his gastrointestinal distress.  Clay’s energy and cognitive focus have declined to the point he has been unable to complete a full school day.   And most alarming to us is Clay’s loss of his joie de vivre.  He is anxious and clinically depressed.

The good news----this latest malaise is not attributed to NEW growth of the cancer.    The not-so-good news----the Docs have yet to be able to pinpoint the reason for Clay’s recent issues.    We must keep in mind  his brain and spine have been infiltrated by cancerous tumors which would be enough to screw up a body.   But why the pronounced symptoms at this juncture?  One suspicion is  this is a sign of accumulated impact from the experimental chemo which for the past 5 years has kept Clay’s cancer from spreading.    Is Clay’s body being undermined by the very chemo drug which has kept him alive?   Before fully contemplating the need to look for an alternative therapy (there are no readily available good options) the Docs are performing every possible diagnostic in hopes of identifying a factor/factors that may be catalyzing his condition.  His latest MRI reveals a "bleed" in his tumor located near his cerebellum which could contribute to some of these symptom.  This “establishing baseline” should be complete on Tuesday and the entire team of Docs will gathering  to discuss the data and provide some next steps for getting Clay’s quality of life to improve.   We hope and pray for some relief for Clay; right now he is in a physical and mental crater.