In Their Words – 2006
Patients share their Dana-Farber experience
Suzanne George, M.D.
Dana-Farber Cancer Institute
44 Binney Street
Boston, MA 02115-6084
May 1, 2006
Dear Dr. George and the entire Sarcoma Team:
I am currently enrolled in your ET-743 clinical trial and received my first dose in January 2005. Although I live in New Jersey, I graciously make the five-hour drive to Dana-Farber every three weeks with friends or family. After I receive my 24-hour infusion, my energy level drops a bit, I battle nausea, but I still manage to be the mommy (to my 7-year-old son Tyler and 10-year-old daughter Courtney) and wife to my family. This "downtime" lasts about six days and then I spring back to life and return to my energized self.
The care I have received here at Dana-Farber has been impeccable from my nurses in the CRC and the infusion center, to my schedulers Dorothy Sutton and now David Flanagan, to my research nurses Leslie Yiankos, Travis Quigley, and Maura Reever, and to you Dr. George, the most caring, knowledgeable and honest oncologist I will ever meet. You have treated me not only physically but also mentally. Every complaint, no matter how minor, is addressed and we work as a team in deciding my care. My phone calls are returned promptly and after hours or on weekends if necessary. Working with me, a fellow healthcare professional with a lot of questions and opinions, is not easy, I am sure, but you do it with grace.
You, Dr. Morgan, Dr. Demetri, Leslie Yiankos, Kathy Polson, Travis Quigley and everyone else on your team have devoted your lives to finding a way for sarcoma patients to LIVE with our disease. To be the mom, the wife, the sister, the daughter that we want to be. I know I can speak on behalf of all of the patients with sarcoma.thank you.
This drug, ET-743, Yondelis, or the sea squirt as it is known by my circle, has enabled me to live my life over these past 15 months. I have lived well. I danced front and center with my "dancing moms'" tap group at our recital. I was the class mom in my son's kindergarten class planning all of the parties and watching the laughter of the children, while raising awareness of leiomyosarcoma (LMS) in the process.
I was an active Girl Scout leader for my daughter's troop, camping and hiking and having fun.
I had a wild 40-year Luau birthday bash with 175 of my closest friends and family, complete with authentic Hawaiian dancers and a pig roast.
I organized a 600 person Spring Camporee for Girl Scouts and their mothers in my area appropriately themed-LIVESTRONG-Outdoors. During that event, with every muscle in my body burning, I climbed to the top of the rock wall and rang that bell in tears as little girls yelled from below "Don't give up!"
I formed a support group with the help of the Wellness Center of Central NJ for children who have a parent with cancer called Kids Connect / Parents Connect.
My daughter, my sister and I raised $30,000 for the National Leiomyosarcoma Foundation (NLMSF) while participating in our local Relay for Life events and running several other fundraisers.
Battling this disease takes up a lot of time and energy. I wanted to take the time now to say thank you.
Fondly,
Dawn Peragallo, PharmD., mother, wife, sister, aunt, daughter, LMS survivor
