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.
hooray!!!!
ReplyDeleteAwesome news!!!!!
ReplyDeletegreat news! I've been following your daughter's story from Declan's Journey site. I am so impressed with your upbeat attitude!
ReplyDeleteWay to go Evy!!
Whew! We've always known Evy to have a huge heart - now it is confirmed by a cardiologist (well, slightly enlarged, at least). Love it!
ReplyDeleteWOOT WOOT WOOT WOOT a million times infinity!
ReplyDeleteJust made my week!!!!
ReplyDeleteLove and light,
Lindsay
So wonderful! XOXO
ReplyDeleteSO great:)
ReplyDeleteGreat news! Yeah Evy! She's got lots to grow into. :)
ReplyDeleteWe'll miss you tonight, too tough to make it down and back. So sorry we won't be there, but are sure it'll be a blast. Raise a lot of money!