It was a long day at the hospital but we are home and settled back in until next month. This was just a monthly check up and med pick up. -We discussed his episodes of near fainting/nausea and stomach issues which they feel is vasovagal syndrome…..Google it….. -Labs were good but keeping an eye on his liver enzymes, side effect of the drug. -Arms are coming but there may be some vascular/nerve issues that will be further discussed with the neurosurgeon later on. -Fatigue still an issue but it’s also the #1 side effect. Endocrinologist will weigh in next month after labs on that as well as puberty stuff which we decided to not intervene with that a couple months back. Let nature take it’s course. It’s early due to his hydrocephalus and shunt placement and typical for patients like him. But he’s up almost 3lbs and I have no idea how because he’s still not tolerating food much at all. It’s hard to imagine it will be a year of treatment in September and that he still has 14 months after that. Cancer is one hell of a monster to live with but live with it we do.

from Life with our little Super Hero Adler Bear https://ift.tt/3aDpcoP

Adler