Sep 14, 2019 Latest post:
Nov 24, 2020
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Tristan was diagnosed with Langerhans Cell Histiocytosis on September 11, 2019. This was exactly two weeks after we saw the first visual symptom. LCH is a rare disease that is not inherited. It is also not believed to be genetic. It is acquired after conception and the cause is unknown. It's not like a cancer (although it proliferates like a cancer), his cells are doing what they are supposed to, they are just doing too good of a job. He has some mutated immune cells that are stuck in the "on" position. So instead of just attacking bad things, they are also attacking good things. He has low-risk LCH, meaning none of his risk organs are affected. Only his lymph nodes are affected right now, although there is evidence that he had a small skull lesion at one time. He is feeling perfectly fine as far as we can tell.
He started chemo on 10/16. Chemo will last one year and we hope all of these mutated cells will be eradicated during this year's treatment .