5 days in and the steroids don't seem to be doing anything. Total WBC is up from 0.23 to 0.36 but neutrophils are only accounting for 0.02 of that. I asked if they could give her G-CSF in tandem with the steroids but they were reluctant too since in the past she hasn't responded to them at all.
So, another week of steroids and another check up on Monday in London. This feels like the last chance saloon for her and it's starting to get very upsetting. They haven't talked next steps yet but I don't know if we would want to take the 60% survival odds of a bone marrow transplant. Even if we did it might not work in the long term if there is an underlying problem outside of the bone marrow that they haven't discovered.
I'm searching and searching every day but I can't find a single story or article of anyone with the exact same symptoms as her. Almost all the cases are anomalies at birth but she was fine for the first 20 years of her life. Then 12 years of being slightly neutropenic, now total neutropenia and no response to any traditional medications. I knew she was special when I married her but I didn't realize how special
