Love the dancing, love the pictures, BUT REALLY LOVE THAT THIS IS THE LAST FULL MONTH OF TREATMENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Its going to fly by....
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.
Love the dancing, love the pictures, BUT REALLY LOVE THAT THIS IS THE LAST FULL MONTH OF TREATMENT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Its going to fly by....
ReplyDeleteLove and light,
Lindsay
This is such a great video. I could watch it over and over..well I have watched it over and over!
ReplyDeleteCute, cute, cute. Nice article. I love Stella's butterfly!
ReplyDeleteLast full month of treatment is just AWESOME!
ReplyDeleteThat's right, I was so into the video and the cool article that I glazed over the LAST FULL MONTH of treatment! Great news, Carrolls!
ReplyDeleteYeahhhhhh!!!!!!!!
Aidan and Claire just watched the video ten times in a row. And Aidan is now asking me: Can we see it again, Mom?
ReplyDelete