We are all home together. Everything went well with Evy getting her PICC line and she got to get it done bright and early. Fantastic. Have a great weekend!
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.
Yea!! Have a wonderful weekend at home. We will get together another time soon. I promise. Love Love, Erin
ReplyDeleteYay!!! Enjoy home together - nothing is better!!! Give the girls hugs from all of us!
ReplyDeleteLove and light!!!Lindsay
So happy to hear this:)
ReplyDeleteWonderful! And the (much) earlier offer stands - if you need support in northern VA, just holler.
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