Renee was diagnosed in 2019 with an autoimmune disease called lymphomatoid granulomatosis (LYG). It is a lot like cancer and it is very rare. While it can have other manifestations, it mainly involves nodules and masses that form in, and damage, the lung tissue. There is no standardized consensus for treating it.
Thankfully, the National Institutes of Health (NIH) in Bethesda, Maryland has had a team studying LYG for several years and physicians there are conducting clinical trials of the two treatment programs known to show success in treating it. Those treatments are chemotherapy and interferon injections. Renee has been through both and they were rigorous. Unfortunately they were not successful.
The plan now is for Renee to undergo a stem cell bone marrow transplant. That will be done in Bethesda. The transplant will basically give her a new immune system that will hopefully recognize the disease and fight it off. The transplant offers us hope that, after three years of trying to understand and fight this disease, we will turn the corner on it.
Renee will be in Bethesda until approximately March, 2022. I will post here periodically so that we can update everyone out there pulling for Renee and our family as we progress through the transplant.