emily was diagnosed with a 4.5 cm pilomyxoid astrocytoma in her cerebellum (the portion of the brain that is responsible for coordination and movement) on january 27, 2010. she had a near total resection the next day, and because the tumor showed signs of regrowth on a later MRI, she began chemotherapy in april. pilomyxoid astrocytoma is a rare, recently identified tumor entity. it's considered relatively low-grade and treatable, though there are cases in which the tumor is less responsive to treatment and/or disseminates to other parts of the body.
-- in general, she's doing great. her protocol is designed to be long but well-tolerated and she's expected to be able to keep up her busy social schedule most of the time. We're about a month into a 15-month regimen.
-- we hit a snag early on: her dose proved to be too high for her bone marrow to keep up with and we had to hold treatment on week three. her team at sloan has adjusted the dose going forward so that shouldn't happen again.
- we have our first opportunity to see how her tumor is responding to treatment in early july when we'll have our first MRI (every three months thereafter). if, for some reason we find this protocol isn't affecting her tumor there are quite a number of treatment options available to us. pilomyxoid astrocytomas are relatively slow-growing tumors so it's not urgent that we compromise emily's short term quality of life to quickly eradicate the cells.
-- the atmosphere at sloan is very supportive and, dare i say, FUN for a two year old. we feel very lucky to have the team (and i do mean TEAM of doctors) we do.
Emily, Katherine and Peter,
ReplyDeleteI want to let you know that Emily can beat this monster. Ken, her grandfather, told me a little bit about Emily's story. I know first hand, beacause I too am figting the beast.
You are in good hands at Sloan Kettering.
Be good and thanks for the update.
Jimmy B.