and forevermore will be (didn't know I was a poet did you???)
Sending love and light to Stevy, Lindsay, VAN, Anna, Amelia, Matilda and Orange Orange?!? xoxoxoxoooooxxxooo (this is my third attempt, finally gave up and signed in to a VERY antiquated blog profile! no more anonymous I guess. damn.)
Congratulations!! This news makes us feel sooooooo happy and encouraged. We can't wait to get our hands on those girls. GH picnic in a couple weeks? Love Love
Greatest blessed news we could have:) Evy your are such an awesome, wonderful and strong little girl! You make my heart sing:)Big Hugs and kisses ~ Angie, Gordon, Autumn and Mandy
Just stumbled on your blog randomly. Congratulations! And what a lucky kid to have such proactive and engaged support (was looking at your diet post, not the easiest meals to prepare for a kid I'm sure.) Anyways, glad to hear the continued good news! Thanks for sharing
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.
yay! been stalking all day hoping for this news! Love the new pics too! :) -Jessica Kropf-
ReplyDeleteand forevermore will be
ReplyDelete(didn't know I was a poet did you???)
Sending love and light to Stevy,
Lindsay, VAN, Anna, Amelia, Matilda and Orange Orange?!?
xoxoxoxoooooxxxooo
(this is my third attempt, finally gave up and signed in to a VERY antiquated blog profile! no more anonymous I guess. damn.)
Congratulations!! This news makes us feel sooooooo happy and encouraged. We can't wait to get our hands on those girls. GH picnic in a couple weeks? Love Love
ReplyDeleteYeah to our friend NED, and double yeah for the great pics. See you guys shortly, right?
ReplyDeleteGreatest blessed news we could have:) Evy your are such an awesome, wonderful and strong little girl! You make my heart sing:)Big Hugs and kisses ~ Angie, Gordon, Autumn and Mandy
ReplyDeleteJust stumbled on your blog randomly. Congratulations! And what a lucky kid to have such proactive and engaged support (was looking at your diet post, not the easiest meals to prepare for a kid I'm sure.) Anyways, glad to hear the continued good news! Thanks for sharing
ReplyDeleteSo, so, so happy to hear this news!! ~Shanna
ReplyDelete