We are holding a benefit in honor of Robert Stockwell to fund the Fibrolamellar Cancer Foundation www.fibrofoundation.org Please come support this great cause that needs attention! All you have to do is come to Iron Fist Brewing Co. June 29th, anytime from 12-5pm and have a beer and you are helping!! Iron Fist will also be giving out a tour of their brewery with a flight of beers for $10 which will completely benefit Robert.
Mish Mash Food Truck will be there serving up delicious food and donating part of their profits.
We will have a raffle and be giving away awesome prizes! Like Fancy Wines, Restaurant Gift Certificates, and Free Yoga Classes at Vinyasa Arts!
Special Thanks To these businesses for their generosity and donations:
Vinyasa Arts Yoga: https://www.facebook.com/
Iron Fist Brewing: https://www.facebook.com/
Craftsman New American Tavern: https://www.facebook.com/
Copa Fina Imports: https://www.facebook.com/
Left Coast Brewing Company: https://www.facebook.com/
A NOTE FROM ROBERT’S SISTERS:
Born and raised here in Southern California, our little brother, Robert, 18, has always been wise beyond his time. With a generous and kins heart he has always acted as a role model to those closest to him. In 2013, Robert graduated from Great Oak High School where he was honored with the prestigious Ronald Reagan Presidential Award that recognizes students for their outstanding leadership, drive, integrity, and citizenship skills emblematic of our nation’s 40th President. With a passion for technology and music, Robert proved to be an invaluable asset to his high school through the ASB program. He single-handedly revamped the sound technology for all major school functions; football games, pep rallies, dances, you name it, Robert was working diligently around the clock and until the the wee hours of the morning some nights to make it all happen. After he graduated high school, Robert went on to Palomar College to pursue his passion and a degree in Computer Engineering. It was after his first semester that we received the diagnosis. Fibrolamellar Heptacellular Carcinoma, an extremely rare type of liver cancer, one that affects a mere 200 people a year worldwide, accounting for less than 1% of all teen and young adult cancers. The weeks leading up to the diagnosis and the month following, Robert spent his days in and out of doctor’s offices and hospitals fighting for his life and searching for answers. It was five weeks after the diagnosis that we found Dr. Busittil and his amazingly talented, compassionate, and diligent team of doctors at the UCLA Ronald Reagan Medical Center. The only team willing to take our brother on as a patient and candidate for surgery to remove the massive tumor on his liver and the one that had spread into the atrium of his heart. In a mere few days after the initial meeting with the team of doctors at UCLA, Robert’s condition worsened and became more complicated, but the team did not give up they did everything in their power to keep our brother alive until a liver donor became available. Within 12 hours of being added to the donor list, a match was found, which lead to the surgery that saved Robert’s life. Robert’s initial journey happened at lightening speed and by the grace of God he sits with us today. The journey ahead is long one, but what keeps Robert going is the idea of spreading awareness about this rare, quiet, and quick-spreading disease. The more knowledge we gain about Fibro, the more power we have to fight and beat it and is also why we chose to give the proceeds of this event to the Fibrolamellar Foundation, which shares that common goal of one day finding a cure by using their donations and grants to fund extensive programs that specifically research this disease.
What is Fibrolamellar?
Fibrolamellar- (fibro-la-mel-lar) is our abbreviated name for – Fibrolamellar Hepatocellular Carcinoma which is a rare form of liver cancer that usually occurs in young adults who have no history of liver disease. Each year, approximately 200 people are diagnosed with this cancer worldwide. Patients typically present with a palpable abdominal mass but no symptoms, although pain, weight loss and jaundice may occur. The typical treatment is surgical removal of the tumor. When the tumor cannot be removed surgically or when there is distant spread, chemotherapy is used. There is no standard chemotherapy regimen so the chemo cocktail varies from patient to patient.
WHAT WE KNOW
• Fibrolamellar strikes males and females alike
• Risk factors for fibrolamellar remain unidentified
• Currently, there are no effective treatment options other than liver resection surgery
• It effects primarily teens and young adults (although cases as young as 7 and as old as 74 are known)
• The fibrolamellar variant of hepatocellular carcinoma differs from the “classical” form of hepatocellular carcinoma in several important aspects including:
◦ Most patients with FHC do not have underlying cirrhosis of the liver
◦ Hepatitis B infection is very uncommon in patients with FHC
◦ Serum levels of alpha-fetoprotein are usually not elevated in patients with FHC
• Only two organs in the body have an ability to regenerate themselves: the liver and the skin
• Initial diagnosis generally comes from symptoms arising with advanced disease
WHAT WE HAVE HEARD
• There appears to be a concentration of the disease in Shanghai
• The number of cases worldwide is increasing
• There could be a link between FHC and gynecomastia (Gynecomastia is a condition of pubescent boys/men where they show excessive breast tissue. Note: we were informed that it is the hormonal influence of the fibrolamellar cancer cells that cause the gynecomastia)
• There could be two variants of FHC, one more aggressive than the other (Some cancer cells “push” other cells aside, while some cancer cells “eat through” other cells. Tucker’s cancer cells, which are still alive in laboratories, are very aggressive and are “eating through” cells around them)
• Environmental factors appear to have some play here as the disease and its markers were not seen until the 1950’s
• There appears to be a hormonal effect of FHC
Written by Tucker Davis in early 2009
My name is Tucker Davis and I was diagnosed with fibrolamellar hepatocellular carcinoma (liver cancer) in August 2008, a few months shy of my 27th birthday. At the time of my diagnosis, I had just quit my job in NYC as an investment banker and was enjoying the summer months before applying to grad school or starting at a new job in the fall. In the months leading up to my diagnosis, I began to experience flu-like symptoms, but nothing alarming. Some days I felt great, while others I felt like I had a cold. After a cough began, I visited a pulmonologist and had a complete physical where all appeared normal, including my blood work.
Eventually, I began to experience a sharp pain in my back that travelled down my leg. My leg began to swell and it was painful to walk on. This was no ordinary pulled muscle, I thought to myself. By this point I was pretty sick and unable to hold any food down. I was admitted into the hospital and diagnosed with a large blood clot (this was the pain in my leg) and given a CT scan. The cause of the blood clot was clear – it was liver cancer.
Fibrolamellar is a rare form of liver cancer diagnosed in an estimated 200 people a year worldwide. Fibrolamellar is a young person’s cancer; diagnosis usually happens in a patient’s teens or 20’s. In addition, this variant of liver cancer occurs typically without any signs of a diseased liver (no hepatitis or cirrhosis). To date, there are no effective treatment options for my type of cancer, other than surgery. Since it is so rare there is little research done into identifying risk factors or finding a cure. This will change. I founded and established the Fibrolamellar Cancer Foundation to raise awareness of fibrolamellar, to find a cure and to bring attention to young adult cancers.
We are passionate at FCF about raising funds to further the study of fibrolamellar to find better treatment options AND A CURE. I want to reach out and help others diagnosed with this form of cancer and find answers.
Thank you for visiting the FCF website, and I appreciate your support.
Keep on Tuckin’
Keep On Tuckin’ is the expression Tucker and the Davis family adopted to represent his struggle to survive. Now it has become the slogan anchoring his legacy.
Keep on Tuckin’ stands for hope.
Hope that we can help find treatment options that will extend patients lives in a quality-of-life way.
Hope that the first fibrolamellar Clinical Trial we funded will prove viable and that effective drugs will be available…soon.
Hope that by collecting a database of patients symptoms,
tissues treatments and chemo regimens, we can help the medical experts find clues sooner. (See Faces of Fibro)
Hope that all fibrolamellars have the strength to keep on fighting.
Hope that cure is more than a word!