Welcome to Emily's blog! You can check here for updates and pictures of Emily.

Please feel free to post any comments for Emily, Katherine or Peter directly to this site, but if you have any questions for them, comments about the blog itself, or want to do more to help, you can contact the blog maintainer (Amy - amy.byrum@gmail.com).

Monday, May 31, 2010

water's on!

ice cream!

Emily, Diza and Silvie stop for ice cream before hitting the playground.


Baby Shower

Emily's friend, Maggie, just got a new baby brother named Oren. Here is Emily at the baby shower.

Sunday, May 23, 2010



Emily and Diza sort junk from the spring fair.


Emily and Diza take advantage of the nice weather.

Emily and Katherine

Friday, May 14, 2010

pretzel break

Here is Emily taking a pretzel break on a playdate at Maggie's house on Tuesday.

On Wednesday, she went to the hospital for a CT scan which happily found no hydrocephalus and no noticeable recent growth.

I just saw her coming back from her chemo day at the hospital today and she looked tired but happy.

Sunday, May 9, 2010

playground chat

history and update

Katherine has provided me with the following synopsis of recent events:

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.

the gang

Here is Emily one year ago with some of the members of her street gang, Silvie and Diza.