Hi, we are Jill and Brian, mama and dada to beautiful twin girls, Stella and Evelyn. Evy was diagnosed with a rare type of highly aggressive brain cancer called AT/RT in November of 2009 at the age of 22 months. She has completed her treatment, which consisted of 17 rounds of chemo over 53 weeks and concurrent proton beam radiation for six of those weeks. She is currently disease free. We now rely on MRIs every three months to make sure it has not returned. Evy rhymes with Chevy.
For other AT/RT parents / brain tumor nerds: Evy had one mango-sized tumor located in the supratentorial region of the brain. She had a full resection. There was no metastisis to the spine. Evy completed the IRS III protocol (version 38) with 28 rounds of proton therapy radiation. She does not have the INI1 deletion. Evy had a stroke because of her tumor and is still making strides to recover from it. She can walk, but cannot yet use her right hand. So far, Evy's negative side effects from chemo and radiation have been: cardiomyopathy, permanent baldness on her radiation site, and drastic loss of natural growth hormone.
To read about Evy's ng tube feedings during treatment, click here.
I have to say WOOOOOOHOOOOOO!!! I am so happy!!!
ReplyDeleteBest news EVYr :)
ReplyDelete9 more weeks....then HUGE CELEBRATION!
xo
MT
YES!!!!!!! HUZAHHHHH!!!!!
ReplyDeleteAWESOME! I love the pictures, too! They are so adorable, and happy!
ReplyDeletekicking some serious cancer butt, evy!!!!! LOVE LOVE LOVE the pictures!!!!!!!!!!!!!!!!!!!!!!
ReplyDeletelove and light!
Lindsay
I am so thrilled for all of you! And, I LOVE the pics of the girls in the dresses! They look like they're having an absolute blast!
ReplyDeleteWhat a huge relief!!! Thanks for sharing. Hugs all around tomorrow at the walk?
ReplyDeleteLove Love
Erin
Such great news, Jill! It was great to meet you at book club.
ReplyDeleteYAY EVY!
Katie Dugan
LOVE LOVE LOVE!!! Go, Evy, go!
ReplyDeleteWhat a wonderful way to end my night…yay for all of you!!!
ReplyDeleteSo wonderful!!
ReplyDeleteFantastic news, Jill! I'm so happy for you all!
ReplyDeletebest three letters out there!!!
ReplyDeleteGreat news! So now are you all gonna celebrate with lunch at Whole Foods? (Who does that? Besides us.)
ReplyDelete