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One Step Closer – Showered with Love in Illinois

Early this year we told you about Lisa Simpson who lost her brother Nicky John to bile duct cancer 21 short days after diagnosis in April of 2014 and how she wanted to do something in his honor to raise awareness. Co-Founder Sue Acquisto of The Bili Project Foundation traveled to Illinois to meet Lisa, Ruth Kramp and their team of BILIever volunteers in person to thank them for the tremendous work they did in bringing awareness to Bile Duct Cancer. Sue received such a warm welcome upon arrival and was presented with a check in the amount of $15,375.59 which they raised from the two fundraisers organized earlier this year. Sue commented, “This group of volunteers who have had personal losses and challenges in their life are an inspiration, they worked together tirelessly with the support of their community businesses to raise this money in support of The Bili Project Foundation.” She expressed to this group of BILIevers, how grateful the foundation is and that every dollar they raised will go towards our continued efforts in raising awareness and finding a cure for this disease.

To see photos from the two fundraisers Lisa planned and organized click here.

Bili Check IMG 54Bili check with group IMG 61Cutting Bili Cake IMG 68group pic of participants

Save the Date: 4th Vincent Acquisto Memorial Golf Tournament

It’s that time of year again. Make sure you save the date to attend this years tournament in Danville, CA.

Click here for additional tournament details and download the registration form here.

VAMGT-Save-the-Date_2015

Passion & Persistence Result in 2 Amazing Events

Back in February we told you about Lisa Simpson who lost her brother Nicky John to bile duct cancer 21 short days after diagnosis in April of 2014 and how she wanted to do something in his honor to raise awareness.

Motivated to make a difference and spread awareness of this silent, fast acting cancer, Lisa’s passion and persistence resulted in not one but two amazing events.

On March 7, 2015 she planned and organized an event that included appetizers, a raffle and all things green in honor of bile duct cancer awareness, raising $8,692.00.

On April 12, 2015, Lisa organized a 5K walk/run in Bliss Woods, Illinois with nearly 100 participants and raised over $5,000 for a grant total (between the two events) of nearly $14,000!

BILIevers like Lisa Simpson bring us one steps closer to finding advanced methods of early detection, treatments and cures for Hepatobiliary cancers. Amazing work Lisa!

Funds raised will go to support the continued efforts of our foundation.

Check out a few of the photos below from Lisa’s 5k walk/run in honor of her brother Nicky John.

Bili Project Fundraiser 287 Bili Project Fundraiser 345 Bili Project Fundraiser 354 Bili Project Fundraiser 361 Bili Project Fundraiser 373 Bili Project Fundraiser 416Bili Project Fundraiser 5

High School Sweethearts Separated By Bile Duct Cancer

Ms. Jessica Ivey originally published this post to a Facebook support group page in December of 2014 and sent it to The Bili Project Foundation earlier this month to share with its supporters. Since this was first posted, Jessica’s partner of 21 years passed away from BDC in February of 2015 at the age of 39 years old.

Let’s continue to spread the word about bile duct cancer and create awareness about this silent killer.

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One of Jessica’s favorite photos of her and her husband Domonick Ivey.

I’ve started this so many times and deleted for reasons I’m sure everyone in this group can understand. People tell me I need to talk to this out but THIS group has honestly been some of the best therapy. I must start off by saying you all fighting this are MY TRUE HEROES and whatever you do remain strong! I know there are many days you all live in pain mentally and physically, my hope for you all is a peace of mind & a break from all the pain.

So…here goes…our story: My husband was diagnosed with BDC in 2012 at 36 years old. This is after several bouts with severe stomach pain and months of ER visits. We started our journey in August of 2012 and was told his Gallbladder was failing and needed to be removed and something else fishy was going on but no one would just “say it.”

They did some exploratory scopes, placed some stints in for digestive “comfort” and still he remained in excruciating pain. We kept thinking “gosh, this sure is a lot for a malfunctioning GB!” Looking back i don’t know if it was an insurance game (Kaiser in GA is an obstacle to put it nicely) or if doctors had been truly puzzled. They just kept saying they didn’t want to just go in and do surgery w/ out knowing for sure what the something else fishy was.

This went on for 2 mos. until I refused to remove him from the hospital out of sheer stubbornness really. We had been back & forth so many times I was dizzy & he was becoming weaker, eating less, it was a hard time. I remember thinking of him as a fighter (he truly is the strongest man I know). I told him if they would “show him his opponent he will FIGHT this!”

10/02/12 they went in. The doctors performed a 7 hour surgery and confirmed bile duct cancer. This was the first time I had heard of such a thing. I remember thinking “who would tell my husband-how in the world was I supposed to tell him that, he’d be out of the surgery room soon.” For the first time I was panicked. Not to mention who would tell our boys 15 and 4 at the time? The doctor said the great news was when they got to the liver/the pancreas there was no sign of cancer. They reconstructed his BD, removed his GB and we went on about recovering and boy did he recover!

I still question why no chemo or radiation during that time. The Piedmont Hospital team here in Atlanta had been very good to us. So while we questioned it we didn’t push it. In layman’s terms the doctor said to us “there is nothing to do chemo or radiation on.” They couldn’t promise it wouldn’t come back but assured us there was a great hope. One thing I’ve learned about cancer is it’s full of surprises!  They said my husband’s cancer most likely derived from a Choladocal (spell) Cyst that he was born with. They say children these days wouldn’t suffer this cause it would be detected in a prenatal ultrasound. They asked lots of questions about his diet and upbringing. He had some issues growing up but he had an old school grandma that kept his bowels moving and diet clean.

When I met him at 16 this man hardly ate fast food. As we grew older I realized that chicken and a hand full of veggies was about the scope of his diet-no dairy-nothing rich (I think he subconsciously learned what worked for him at a young age and it works for me because I’ve only had to master a few meals through the years!) His main concern was if it was hereditary and we learned most likely not! He was so relieved…still a father of 2 boys and at the end of the day this was the thing in the forefront of his mind, this man amazes me. He’s fighting for his life and still worried about his family. So now to present.

The cancer showed up again in October of 2013. It had metastasized to the lymph nodes.  This was our first time seeing the oncologist although he was involved very much in my husband’s team during the 2012 surgery. He began Gemzar/Cisplatin and he did that until February 2014. Clean scans, we celebrated, June came and he says he knew it was coming back from the familiar pain in his stomach. We now know this pain is his lymph nodes swelling.

The doctor eventually told us that surgery didn’t appear to be an option, again do to the location of the swollen nodes (behind the abdominal wall). He had been in talks with the surgeon and they just didn’t see it beneficial. We moved on and he began his regiment of Xeloda and Oxiliplatin. He’s done that since June and hadn’t bounced back to his old self like he began to do the first regiment.

So now a couple of weeks ago they told us that the scans are showing his lymph nodes enlarging- although it seems we can almost tell them before they can us based on his symptoms. Our doctors at Piedmont are linked with MD Anderson. The specialist at MDA feel the next step is a phase one trial drug called Irinotecan. I wanted to know if any of you have any insight as to its side effects and success?

At this point he’s been on chemo more of the year than not. He’s sooooo strong and proud that I’m sure he wouldn’t even be comfortable with this post. Bottom line is I always questioned the no chemo and radiation decision after the 2012 surgery and I don’t want to look back a year from now and think something could’ve been done differently if I had of pushed a little harder.

As caregivers we become protective and we know them so well. I feel he’s weaker these days and he’ll most the pain meds they have him on I’d be loopy to say the least myself. I don’t want any door left open and stone unturned. Any insight would be great and prayers welcomed.

Love and peace to you all! One of my favorite pics of me & my Mr.! Literally right before this journey began in 2012. My high school sweetheart…my love!

– Jessica Ivey

From Diagnosis to Death in a Few Days: A Widow’s War Story

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Anne Pettiti with her husband Mario (second to the left) at their son’s wedding taken on January 1, 2010.

My husband was a relatively healthy man. He had diabetes related to Agent Orange, but kept it managed. In November of 2009, he started having some stomach pain, loss of appetite and sporadic nausea. He was a referred to a gastroenterologist and was found to have ulcers and H Pylori. He was prescribed a round of antibiotics. On his follow up appointment with the gastroenterologist, he had lost some weight and he told the doctor, he still did not have an appetite. The doctor told him it was because of the ulcer and he should force himself to eat.  In the middle of January of 2010, he started having stomach pain that radiated to his back. We took him to the ER at a VA hospital. They did some testing. I told the Dr. at the VA that I thought my husband looked yellow. The doctor told me it was the lighting in the ER. At that time, I don’t think his liver levels must have been out of range, or they should have caught it in the ER. They told him he must have pulled a muscle. During that time he still worked a full time job. The end of January, his urine looked dark. We called the VA nurse on call, explained the symptoms, and she told him it must have been something he ate as the reasoning for the dark urine. I knew something was wrong, so I told my husband I was going to call the private gastroenterologist who diagnosed his ulcers. The gastroenterologist then sent my husband for blood work. At that time the blood work came back with many of the levels being off. The doctor told me he had a feeling it was Cholangiocarcinoma, but wouldn’t know without further testing. My husband had a CAT scan that showed one thing and an MRI that showed something else. The doctor said the only way to know for sure was to have a PET scan. By the time we waited for all the testing to take place it was the end of February. The doctor called us the end of February and told us to see an oncologist.  The oncologist diagnosed him with Stage IV Cholangiocarcinoma. He had his first Chemo on March 1, 2010. He progressively declined. He passed away on March 13, 2010. So from the first onset of symptoms, which was diagnosed as ulcers, it was only four months till he passed away.

190024_4461454912804_778115930_nMy husband was a Vietnam Veteran. One of the causes of Cholangiocarcinoma is Dioxin, which is found in Agent Orange. Another cause is exposure to liver flukes, which are prevalent in Vietnam and surrounding areas. It can be caused by eating improperly cooked fish or poor sanitation methods when preparing food and cross contamination. The liver flukes do damage to the bile ducts. If one has a light case they might not have symptoms. After exposure, sometime, it takes twenty to thirty years or more before this cancer develops. This is happening to many of our Vietnam Veterans. In most of the cases, the diagnosis happened the same way as it did for my husband. The Veteran is relatively healthy, symptoms happen suddenly and within months the person dies.

Team Bili at the LA Marathon & LA BIG5k

Team Bili hit the streets this passed weekend participating in the LA BIG5k and 2015 LA Marathon. With nearly 20 Team Bili 5k runners/walkers, approximately 6 charity relay teams and 7 full marathon runners, Team Bili definitely represented! Check out some photos below from the weekend.

Team Bili at the LA BIG5k  Team Bili at the LA BIG5k

Team Bili at the LA BIG5k  Team Bili at the LA BIG5k

Team Bili at the LA BIG5k  Bili_k5_7

Team Bili at the LA BIG5k  Team Bili at the LA BIG5k

Team Bili at the LA BIG5k  Team Bili at the LA BIG5k

Team Bili at the LA BIG5k  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at mile 5!

Team Bili at mile 5!  Team Bili at mile 5!

Team Bili at mile 5!  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at the 2015 LA Marathon

Team Bili at the 2015 LA Marathon  Team Bili at the 2015 LA Marathon

One BILIever Helping to Make a Difference

Nick_Spang1The Bili Project Foundation has so many BILIevers who share the same passion we do for raising awareness of Cholangiocarcinoma (bile duct cancer) and the cancers that effect the Hepatobiliary system. One BILIever in particular, Lisa Simpson from Illinois who lost her brother Nicky John to Bile Duct cancer last year, reached out to our foundation over the summer and wanted to plan a fundraiser in his honor and that’s exactly what she did!

On April 12, 2015 Lisa will be lacing up her sneakers and beginning a 500 mile journey for Team Bili to raise money for The Bili Project Foundation.

She has decided to take on this challenge in honor of her brother Nicky John, a brave man with a big heart, who was given 21 short days to live after being diagnosed with Cholangiocarcinoma. Cholangiocarcinoma is part of the Hepatobiliary cancers and is a fast acting, silent, underfunded and understudied disease. Consequently, there were no treatment options for Nick.

Funds raised will go to support the continued efforts of our foundation. If you would like to participate, donate or have questions, please email info@thebiliproject.org for more information. 

EVENT DETAILS

The fundraiser is in Honor of Lisa’s brother Nicky John who died 21 days after diagnosis of bile duct cancer (He turned 50 years old during these 21 days)

Here is the fundraising website for the event (All proceeds will go to benefit The Bili Project Foundation)
www.GoFundMe.com/Biliever-Nicky-John

The 2 day event will be held: March 7th & April 12th
• March 7, 2015: Appetizers, Raffle, etc.
April 12, 2015: 5K walk/run in Bliss Woods

Bili Attends the Gastrointestinal Cancer Symposium & 2015 Cholangiocarinoma Foundation Annual Stakeholder Conference

Symposium

Photo courtesy of The Cholangiocarcinoma Foundation. Isabella Guajardo, of UCSF with her poster entitled, “Cholangiocarcinoma and the Internet: What Doctors Need to Know to Best Help Your Patients.” Just one of many 21 posters featured this year alone at the CC Annual Meeting.

The Bili Project Foundation had the pleasure of attending both the Gastrointestinal Cancer Symposium and the 2015 Cholangiocarinoma Foundation Annual Stakeholder Conference earlier this year.

The GI ASCO, which is an internationally renowned Gastrointestinal Cancers Symposium that was held in San Francisco, California in January 2015.  GI ASCO is a high-profile, specialized oncology event designed for the exchange of the latest research and science with physicians and scientists on cancers of the pancreas, small bowel, and hepatobiliary tract; colon and rectum; and esophagus and stomach.  During the event, The Bili Project Foundation co-hosted an exhibitor booth in the ballroom with The Cholangiocarcinoma Foundation and attended the Gastrointestinal General Poster Sessions where we were able to hear and discuss cutting-edge Gastrointestinal cancer research with scientists and physicians from around the world.  The Bili Project Foundation is proud to be involved in funding such meaningful research at UCSF for Hepatobiliary Cancers.

We also attended the 2015 Annual Stakeholder Conference in Salt Lake City, Utah last week. During the meeting, some of the world’s most brilliant scientists and physicians from around the world presented current data on translational and basic research activities involving Cholangiocarcinoma. During the 2014 Annual Stakeholder Conference these scientists and physicians met in-person and collaborated on projects and research proposals, and therefore, we were able to witness the incredible progress these projects have made throughout the past year while we attended the 2015 conference.  Additionally, our co-founder, Susan Acquisto is Chair of the Cholangiocarcinoma Foundation Nursing Advisory Board comprised of nursing experts from large cancer center institutions around the country and presented their groundbreaking work of developing Nursing Care Guidelines for patients with Cholangiocarcinoma which will be submitted for publication in peer reviewed journals of Nursing. Our Bili Research Team from UCSF attended both the 2014 and 2015 conferences as well where they were actively involved in forming collaborative research teams with other scientists and physicians from around the country. During the 2015 Conference our Research Team at UCSF was able to present their collaborative findings over the past year. The Bili Project Foundation is excited to continue funding UCSF’s Hepatobiliary Cancer Research Program, where groundbreaking research is underway.

For more information on both events please visit the links below:

Gold Medalist Ed Moses Donates Winnings from ‘Gaming to Give’ to The Bili Project Foundation

 EdMoses_Gaming2Gold medalist, Ed Moses is halfway to fully completing his personal goal of raising $20, 000 this year for the Bili Project Foundation! He participated in “Gaming to Give” and selected The Bili Project as the charity to donate his winnings. He won first place and donated his winnings of $10,000 to the foundation.

Up next for Ed is the L.A. Marathon where he will be participating as part of Team Bili in the Charity Relay. Can you help him reach his goal and support him by simply clicking the “DONATE” button on the top of the page and make a pledge in his name. This is a perfect example of the good that can be done when we all “play our part.”

“Gaming to Give” consists of various celebrities playing the game “Super Smash Bros” on Nintendo Wii, in a tournament style format to win money for their charity. Some of the many celebrities confirmed to attend the event are former Green Bay Packers Running Back Ahman Green, recording artist Brian McKnight, Detroit Lions Safety James Ihedigbo, St. Louis Rams Guard Davin Joseph, New York Giants Punter Steve Weatherford, Arizona Cardinals Linebacker Lorenzo Alexander, Baltimore Ravens Tight End Crockett Gilmore, Minnesota Vikings Wide Receiver Charles Johnson, and Olympic Gold Medalist Swimmer Ed Moses.

For more about Gaming to Give and Ed read here: http://buff.ly/1EtTM10; http://buff.ly/1EtT3x5

 

Happy Holidays!

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