Evy Beats Cancer: 2.3.10

Wednesday, February 3, 2010

2.3.10

Evy ended up coming home yesterday with pizza in tow. She has been able to tolerate Pedialyte but still cannot keep her thicker, liquid food down (except for when she nurses.) We had a fun day today making Valentine's Day decorations. Tomorrow she will go to the Clinic and probably get transfused.

3 comments:

Barbosa83ScienceFebruary 3, 2010 at 5:50 PM
Yeah! I am glad that it appears she's hanging tight. You're going to keep that pizza place in business! Maybe they'll open a little earlier just to accommodate their new loyal cusotmers. Kisses to the girls!!!!!!
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Paige FigiFebruary 3, 2010 at 7:50 PM
Yes! Continuous waves of love being sent <3
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LaurenFebruary 15, 2010 at 8:49 AM
I LOVE that you're nursing the girls. I often nurse Liam while catching up on how you're all doing. How did the girls like the plane ride to Boston?
Lo
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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.

Evy Beats Cancer

Wednesday, February 3, 2010

2.3.10

3 comments:

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