Genna and Rosie & the RU Women's Lacrosse Team, October 4, 2008!!
Thank you, Friends of Jaclyn!
Welcome to Genna's Place!
We are so grateful to all of you who support us, love us, and pray for us, as Genna battles diffuse brain tumors caused by Neurofibromatosis Type 1...and Rosie fights her own optic glioma & plexiform neurofibroma.
WE MUST FIND A CURE FOR NF!!
************************************* Scan of July 28th is doctor stable for Rosie; Genna's scan of 9/15 is brain stable, spine CLEAR!!
Rosie will rescan in January, Genna in December or January. The next eye check for both girls is November 6
(stable means nothing has grown, not that it's even a speck gone, but hey, we'll take it in lieu of uglier alternatives)
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****March 20, 2006: We Camiolos went south on Genna's Make A Wish Trip...in her words, "I want to go to Disney World on a train"--thank you, MAW.****
A SPECIAL NOTE that I just can't erase, from February 13, 2005: Genna told me "Mom! I can see stars...you know, those little white things!".....I can't say anything to top that!
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WE REMEMBER OUR ANGELS:
Dani-Ella Justis Ryan Timmy James Matthew Kyle Jacob Dakota Jessica Sweet Emma Tiki Bird WE MUST FIND A CURE!!
************************************************************** THANK YOU FOR SUPPORTING OUR COFFEEHOUSE FOR A CURE 2008!! WE RAISED NEARLY $8000.00 (AND COUNTING!) FOR THE CHILDREN'S TUMOR FOUNDATION!!!! THANK YOU!!!
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THE RACE FOR HOPE--PHILLY EDITION ...November 4, 2007.. The G-Force! team ran magnificently...even Genna walked the whole 5K, along with 40 wonderful teammates!!...and as of this typing broke the $4500 mark in fundraising! Thank you for joining with us to honor our warriors, to remember our angels, and to find a cure! www.braintumorsociety.org
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a momentous day: May 3, 2007...I am giving back the Braille Writer...an answer to prayer, one I never expected.
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Check out my brother's page to read about his monster summer races, 50 miles & 100 miles for the NF Endurance Team www.yetifunk.com
embrace the funk. run for a cure.
Yetifunk Gear is still available at www.cafepress.com, just search under yetifunk or NF cure! All profits go towards John's fundraising.
THANK YOU for helping Dave & Andrew break the $2000 mark in fundraising for the Philly distance run to find A BLASTED CURE FOR NF ALREADY! http://www.active.com/donate/nfphilly2008/DCamiolo
www.active.com/donate/nfphilly2008/ACamiolo ... both sites are still open if you found any change in the couch or anything.
For smaller scale running fun, the G-foRce! team is officially begun on the Race for Hope website, www.braintumorsociety.org . Join us the first Sunday in November in Philly to rally f or a cure for brain tumors!
**In loving memory of Nora Coletta**
*******and for our dearest Sandy, always in our hearts*****
“Run when you can, walk when you have to, crawl if you must; just never give up.” --Dean Karnazes ****
Journal
Saturday, October 4, 2008 6:24 PM CDT
Hi,all--
Quick woohoo of extreme weariness...
first: ROSIE'S EYE CHECK YESTERDAY WAS PERFECTION. 100% FABULOUS. "IF YOU DIDN'T KNOW HER HISTORY YOU'D NEVER KNOW SHE HAD A TUMOR" KIND OF WOOHOO!!!!!!!!!
Whatever the weird discrepancy in August's exam, the very nice & very thorough eye guy (who knew about NF, threw out intelligent questions that proved he knew his stuff, but not in a lookatme kind of way, just really asking) found NO PROBLEMS in Rosie's vision.
!
And with the help of our friends Mr. Motrin & Mr. Tylenol, Genna got to go to RU today. She was not well at 5 am, but exponentially better by the time we got to the stadium...crashed and burned on the way out (major headache, and G NEVER complains about pain, I finally told her she has to tell me or I can't help her, it's not like she's doing something wrong if she hurts!!!)...but had a great day.
The RU lacrosse team...you all are AWESOME!!! I e-mailed your coach, but I'll say it here, too...never, ever underestimate the impact a simple act of friendship has on a kid, any kid, but especially one who has suffered like G has. She felt so loved today...despite her headache, she was FLYING when she got home, wanting to tell Grandma & Grandpa all about you guys.
And lacrosse is awesome, I want to play (I would stink, but it looks so fun)!!
Genna cheered her head off, Andrew was mortified, but boohoo. The families of the team put together a fabulous tailgate...really, the whole thing felt like a giant family reunion without the weird uncle that you kind of avoid (no, we don't have such an uncle in the family, I like all my relatives!! a lot! but metaphorically...you know, the metaphorical uncle). It was the warmest in spirit day ever (a bit chilly otherwise, not sure how those winter games will be! but we'll be cheering!).
We are so grateful to the girls, and to coach Laura (and Kelly--we won't tell your fun fact! and Brian, oh pretzel loving Brian...G will remember you!)...it was a brilliant day, and I'm so glad G was up for it.
Thanks especially to Dennis Murphy, founder of Friends of Jaclyn (Jaclyn's dad!) www.friendsofjaclyn.org for making this possible.
I've always been proud to be an RU alum...today I found about 30+ more reasons to be proud.
must go check on my girls...but thanks all, for sticking by us through all the tough days and the days like today! : )
Children's Hospital of Philadelphia 34th Street and Civic Center Blvd. Philadelphia, PA (215)590-3025 if you want to schedule something oncological, I hope you don't have to, ever.
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