TeamCCF

Team
21 Miles of Hope

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$25,000 Goal

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My Story

In the beginning of December 2012, life was great! My wife Lori and I were so happy and so proud of both our children. Our daughter Emma was just finishing up her first semester in college, and our son Cole was a sophomore in high school. Lori felt something was not right in her abdomen and saw a doctor. In less than a week (after a series of tests) we headed to the doctor to find out if something was wrong. The doctor walked in and said, "Lori, you have Cholangiocarcinoma. There is a 15% survival rate to live 5 years. There is no treatment available and your only option is surgery. We have you scheduled for next week to have your tumor removed from your liver."

Unfortunately, surgery was not an immediate option for Lori because the tumor rested against a major artery. Her gallbladder was removed and replaced with an infusion pump to apply high doses of chemo directly on her tumor. The goal was to shrink the tumor enough for surgery to become an option. During this time, the cancer spread to her lungs and surgery could no longer remove all her cancer.

We later discovered that the National Cancer Institute (part of the National Institutes of Health (NIH)) was performing immunotherapy treatment trials. NIH is the federal government research hospital in Bethesda Maryland. Lori's case was accepted by NIH and the trial was successful. Her tumors grew, and she went back for a second trial modified to include a certain drug. NIH had to request a "compassionate exemption" from the Food and Drug Administration since this trial was so new and not yet tested. The second trial was also successful. However, the cancer had now spread to her brain. Because immunotherapy does not work on the brain, her trials at NIH ended.

After a successful professional career, Lori left to raise our children. When diagnosed, she had recently taken a job as an assistant in the main office of an elementary school because she loved kids. Prior to going to NIH, Lori did have the surgery to remove the tumor from her liver. Because the liver grows back like the arm of a starfish, the starfish became the symbol of her cancer journey. The night before we left for Lori's second trial at NIH, she was on Facebook and showed me that all the teachers and staff had changed their Facebook home page to a starfish. As a testament to how profoundly Lori touched the lives of others, the elementary school dedicated the entire south side of the front of the elementary school as a bird sanctuary in her name. It is called the "Lori B. Whiting Bird Sanctuary" and has starfish stepping-stones. A starfish in her memory also resides in front of the library inside the school.

Lori never seemed afraid. Instead of saying "why me," she said "why not me, the cancer just wants to live too." She constantly found silver linings and things to be thankful for in her daily life. Her attitude was extremely positive. Once, she asked me to take a video of a procedure to share with other cancer patients so they would not be scared. She also took the time to prepare her family members for being strong after she was gone.

In the fall of 2016, Lori decided to stop all treatment. Our daughter took off for a semester of college and came back home, and our son (who had recently moved out) also moved back home so we could all be together. On the eve of October 11, 2016, Lori died peacefully in the arms of both my children and me.

While going through trials with Lori, I could not find much information about Cholangiocarcinoma. Therefore, it has become my personal mission to raise money and awareness about this cancer type. To achieve my mission, I will be attempting to swim across the English Channel in July of 2022.

Jonathan P. Whiting, January 16, 2021

 

TeamCCF began in 2016 as a way to raise money through athletic events for the Cholangiocarcinoma Foundation.

Through the years, TeamCCF has participated in numerous races such as the Bank of America Chicago Marathon, the TCS New York City Marathon, the Denver/Colfax Marathon and the Philadelphia Half Marathon.

The Cholangiocarcinoma Foundation (CCF) is the only non-profit organization in North America exclusively dedicated to finding a cure and improving the quality of life for those affected by cholangiocarcinoma (bile duct cancer).

Approximately 10,000 people in the United States are diagnosed each year with this hard-to-diagnose, difficult-to-treat, fatal type of cancer.

Cholangiocarcinoma is a rare but deadly cancer that has very little name recognition or awareness. Due to this lack of visibility, it is often overlooked as symptoms can mimic those of other illnesses and diagnosis comes too late. Conventional cancer treatments remain ineffective against cholangiocarcinoma, and most people diagnosed with advanced disease have less than a 5% chance of surviving at least five years. While almost 2 out of 3 people with bile duct cancer are 65 or older, people of nearly any age can be diagnosed. There has been an alarming increase in the past decade of young individuals being diagnosed in their 20’s, 30’s or 40’s.

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