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We appreciate any way that you'd like to become involved. Become a sponsor, donor, volunteer, or other helper. Connect with us using the contact form and we'll make sure to find a way for you get invo... read moreWelcome to Epi's Site!
www.protectepisheart.com
Hi everyone! Thanks for visiting our site. We started this site because we wanted to promote awareness for Desmoid tumors and we wanted to keep family and friends informed of Epi's progress as she deals with this life changing experience.
Epi discovered a lump in her chest in June 2008 and although she visited several doctors, no one was able to clearly diagnose what the lump was. We had never heard of a Desmoid tumor before. Luckily, Epi's sister is a nurse, and after countless hours of research, she decided it was necessary to visit Stanford. She hand delivered all test results including biopsy samples to Stanford in order to help expedite the process. Shortly after, doctors confirmed Anna's initial diagnosis. Once Epi was diagnosed, the education process began. Within the past three months we have done extensive research and have learned so much about Desmoid Tumors and how incredibly rare they are. Please read through the site and for more information and to read about Epi's firsthand experience of her diagnosis.
We are so grateful to everyone for their overwhelming love and support. Our hope is that you will use the site to exchange messages and encouraging thoughts and prayers. Epi's surgery is scheduled for Friday, September 5, 2008 at Stanford Medical Center in Palo Alto, California. After her surgery, she will check the site often and post updates.
After Epi is in remission she would like to turn this website into a non-profit foundation to help other people suffering from rare Desmoid tumors. Please pass the word to friends and family. We want to establish an encouraging and positive network in order to provide support to those suffering from this type of Cancer. Epi is a strong believer in Mind Over Matter, 'if we are all strong in mind we can get through anything.'
UPDATE:
EPI is at home recovering. Many people have been asking where they can send gifts and flowers. If you are interested in doing so, please send an email through the site and an address will be provided. Thank you for your support. Epi's feeling good and says hello to everyone.
YEAH!!!
UPDATE 9.19.08
Hey all! The surgery was a success!!! The doctors attained clear margins, which reduces the recurrence rate to 20%. I am feeling much better. The drains were the worst because they inhibited my movement, but they were removed last Monday. I am home at my apartment, attempting to de clutter and fung Shei the place. I am still on pain meds, but am very mobile and active, especially when it comes to the Oakland A's. Feel free to drop me a text. I really appreciate the overwhelming support and love I have received during my darkest time. Through adversity there is growth. :)
12.05.2008
3 Month CT scan... Clear! No new growth, off to Hawaii we go.
03.22.2009
Unfortunately, I found a lump growing between rib 8 & 9 on 03.09.2009. After a CT scan, my doctors recommended an additional surgery to remove the mass. Surgery was scheduled for 03.18.2009. The mass was sent to a pathoogist for further testing. We will find out the results on 03.26.2009.
4.06.2009
We (Anna, My doctors, and I) have decided to undergo 6 weeks of daily radiation treatment at Stanford in hopes of ridding the tumor from my body. We hope this will prevent further resection of my rib cage. Wish me luck! I have a CT scan tomorrow and start Radiation on April 14th. :/
4.16.2009-5.26.2009
Radiation
8.26.2009
Follow Up CT
9.02.2009
My family and I (Joy included if you have not gotten she is family), met with my Radio Oncologist. There were abnormalities present on my follow up CT scan. Dr Wapner (Breast Oncologist) appointment to follow.
9.17.2009
Met with Dr. Wapner today. Apparently there is a new growth on the left side of my rib cage, that no one can feel. We are in the process of scheduling an MRI & Ultra sound to see if the location of the growth can be determined.
Dr. Wapner is not convinced the growth is a Desmoid. Dr. Donaldson would like to attack the growth aggressively with a Chemo/Radiation combo. DID I MENTION I LOVE MY HAIR.
What this all means: When the growth is located, Dr. Wapner will either surgically remove it, or perform a needle biopsy.
Also...
Suggested appointment with Medical Oncology to discuss Chemo treatment/Radiation. (F@CK!)
Possible dosage increase of Tamoxifan.
PLEASE CHECK OUT UPCOMING EVENTS PAGE!!!
Jan 10, 2009
Sorry for the delay... I have been tumor free for six months. I am in the process of scheduling my next MRI. Luckily I did not have to undergo Chemo. I am on new meds, but they are the exact same, just different names and dosage.
Jan 29 2010,
Keep the good news coming!
10 months tumor free!