This is her story...
Our inspiration for this project comes from one of our closest friends, Jill, who was diagnosed with a rare form of cancer called Synovial Sarcoma. Please take some time and read her story. Also, you can check out her CaringBridge site which includes multipe posts from Jill and her family members - http://www.caringbridge.org/visit/jillianbentley.
Jillian "Jill" Bentley, age 20, was in her Junior year at Culver-Stockton College when her battle with sarcoma first began. In the fall of 2006 during Thanksgiving break, she began experiencing back pain that continued when she returned to school. During this time, she had a lot going for her. She was involved with the theater department, the honors program and the business program. Also, she was elected to serve as president for the Chi Omega sorority and was looking forward to serving a summer internship, a very prestigious internship, at Arthur J. Gallagher Insurance in Itasca, Illinois.
On February 7, 2007, things took an unexpected turn and the back pain increased and she started experiencing stomach pain and nausea. One of her best friends, Jenny, took her to a clinic in Quincy, IL in which she was transferred to Quincy’s Blessing Hospital. Her parents were notified and she went through a variety of tests and she was admitted. Her parents immediately drove down only to find out that their daughter had been diagnosed with cancer. The scan revealed that there was a large mass in her stomach that measured 13 x 7.5 cm. Even upon hearing this news, she was able to maintain her unbelivable amount of courage and faith. She told her mom, “Mom, its ok, I'm gonna show people how to fight and how to live thier lives the best they can." A biopsy was performed and the results were sent to Mayo Clinic since Blessing Hospital were unable to make a diagnosis. All they could say is that it didn’t look good and gave her about 3 months to life. On February 20, 2007, Jillian was officially diagnosed with Synovial Sarcoma. Jill and her family were referred to a doctor in Texas, but they chose to be treated by a surgeon at Northwestern Hopsital in Chicago, which was closer to home. The surgeon looked over the scans and tests only to tell them that the tumor was inoperable because it was connected to too many major nerves, vessels, and organs. After the pain was controlled, Jillian’s parents took her home and Jill decided to leave Culver.
Shortly after, Jillian began receiving chemotheraphy and radiation, which was ordered by her doctor, Dr. Mark. She received chemo in the hospital for 4 days then was sent home for two weeks. Then would start the cycle all over again. This type of chemo was hard on her both physically and mentally and it caused her to fall into a coma at one point in time. She had restless nights and suffered from hallucinations and strange dreams. She lost her hair due to the chemo and lost an extreme amount of weight.
The news shocked everyone she knew whether it be family, friends, teachers, classmates, etc. The people that knew and loved her weren’t going to stay idle and not help. On April 14, 2007, a benefit was hosted by some of the groups Jillian was involved in on campus. The money raised would be donated to Jillian and her family to help with her hospital bills. The benefit included dinner, silent auction and live music. During the benefit, it was announced that an alumni of Chi Omega had cut her hair for Locks of Love and her hair would be used to make a wig for Jillian. They day after the benefit, the Chi Omega fraternity hosted a Jilly Bean Carnival named after Jillian’s nickname. The carnival was a fundraiser to help raise money for the Make A Wish Foundation, one of Chi Omega’s philanthropy projects. Before Jillian was diagnosed, her first task as president was to organize this carnival. Little did she know then that the carnival would be named after her and the money raised would be given to her for her treatment.
In June 2007, the chemo and radiation treatments were stopped. She continued visits to her doctor for checkups and for scans. She was on numerous medications and experienced pain and nausea. Since the treatment had lasted so long, Jillian was unable to fufill her summer internship at Arthurt J. Gallagher. But the company worked with her and promised her that she would have a spot in the internship program for the Summer of 08. After much thought and deliberation, Jillian returned to school during the Fall of 07. She had a hard time adjusting to the fast paced routine of college and dealing with the pain and nausea while away from home, but she pushed through. In September of 2007, Jillian received some excellent news, the tumor was dead! The tumor was still inoperable, but there were no live cancer cells. She continued her regular doctor visits and continued on the pain medication. Her hair started to finally grow back and she started gaining weight.
While at Culver, she made the most of the time she spent with her friends and sorority sisters. She attended many campus events, dated, completed the honors program with flying colors and never stopped making an impact on people’s lives. She also received many scholarships and recognitions. On May 10, 2008, Jillian graduated with a B.S. degree and with honors. She also graduated Summa Cum Laude and was one of the four students to graduate with 4.0 gpa. After graduation, she moved back home and started her internship at Arthur J. Gallagher in June. At the end of June, she got engaged to the man she started dating towards the end of 07. She completed her internship and in September of 2008, she was offered a full time position at A.J.G, which she eagerly accepted. She spent her time working, visiting with family and friends, planning a wedding (which was set in June 2009), and living every day to the fullest. She still experienced the pain and occasional nausea and made occasional trips to the ER when the pain was unbearable.
Towards the end of 2008, Jillian began experiencing more pain and nausea and made more trips to the hospital. The doctors suspected that some of the pain could be due to the tumor shrinking and pulling on nerves and organs that it was attached to. The doctors did a procedure in order to cut some of the nerve endings to release the pain. This seemed to help for awhile. After some more research, the doctors diagnosed Jillian with celiac disease, a disease in which people cannot digest gluten properly and can cause pain if it is digested. She was put on a gluten free diet, which again seemed to help, but didn’t get rid of the pain. Numerous tests and scans were done in order to find the cause of the pain.
In March of 2009, Jillian’s worst fear came true. The tumor had started growing again and the cancer had returned. Dr. Mark decided it was best that Jillian start the form of chemotherapy that she underwent in 2007. She had maxed out on radiation treatments so only chemotherapy would be administered this time. On March 25, 2009, she started another cycle of chemotherapy. Like before, this chemo was rough on her physically and mentally and she spent a lot of time in the hospital. Like before, she lost her hair and lost weight. Jillian had to leave her job and be put on short term disability. During this time she also formed a CaringBridge site in order to journal about her experience. To visit her site, please go to http://www.caringbridge.org/visit/jillianbentley.
On April 23, 2009, she had to have surgery because the doctors discovered that she had a hole in her stomach, which could have also contributed to her pain. The doctors clipper her stomach. The surgery went well and she recovered quickly. In June, tests revealed that the tumor was getting smaller and the chemo was working. In November 2008 before the regrowth, the tumor measured 7 cm x 5.4 cm, in April the tumor was 8 cm x 5.9 cm and in June it was 6.9 cm x 4.7. Dr. Mark had decided that since the chemo was working, he wanted Jillian to try an outpatient form of chemo. Jillian was a little hesitant about this at first, but she started the outpatient chemo on June 23. For this form of chemo, Jillian would go to the hospital and receive the chemo drugs for 6 hours for four days rather then receive the chemo drugs for 24 hours straight.
On June 27, the outpatient chemo was stopped because Jillian started showing signs of brain dysfunction. She was unable to answer the simplest questions posed to her and she could not stay awake for longer than a couple of minutes at a time. On July 25, another scan revealed that the tumor was still shrinking, but thought it was best to stop chemo and give her body a rest. Dr. Mark wanted this to be her decision so he gave her three options 1) stop chemo all together 2) continue this last round of chemo that she is currently on or 3) start a clinical trial that Dr. Mark had been granted to run. Jillian chose to stop the chemo and to try the clinical trial. The trial was offered to 650 people worldwide, 10 being at Northwestern hospital. This medication would be in pill form and half of the people get the real drug, which inhibits the growth of cancer cells, while the other half received a sugar pill. Jillian started the clinical trial on July 24.
On July 30th, more bad news came. Jillian found out that her short term disability had ended and her job was terminated. She kept her hopes up and continued with the clinical trial. However, on September 10, another scan revealed that while the old tumor was stable, there was a new outgrowth starting to develop, which was about the size of a grape. Since the trial didn’t work, Jillian was probably given the sugar pill. Once again she would be put on a different form of chemo, which wouldn’t be as agressive as the original form. She started this form with high hopes. However on October 27th, an MRI revealed that the tumor was growing and the chemo was not working. So once again, Jillian was put on the old form of chemo that has worked best on killing the tumor but was extremely difficult on Jillian.
The year 2010 was an extremely difficult year for Jillian. The tumor was still growing and her options for treatment diminished as time passed. The old forms of chemo that were effective previously were ineffective this time around. During the Summer, she stopped receiving treatments at Northwestern. There was another hospital, Lutheran General, near her hometown that offered other clinical trials that Jillian could participate in. She had to undergo numerous tests to make sure that she was elgible for the trial at Lutheran General. There were no problems with her test results and she was accepted into the clinical trial. Before starting the trial, her and her parents travelled to Texas to visit the top rated cancer hospital in the United States, MD Anderson, to discuss any other treatment options. The doctors there had few treatment options for her and it was decided that her best option was to continue the trial at Lutheran General. She continued the trial and had some positive results; the tumor was stable. However, as she continued the treatment her body started to wear down. The doctors were unable to regulate her liver enzymes so she had to postpone the treatment. Unfortunately, she had to be dismissed from the treatment because too much time had passed in between treatments. The doctors decided her body needed some time to recover before starting the treatment again.
On September 5th, Jillian suffered a seizure and was rushed to the hospital by ambulance. She was admitted and the doctors told the family that they had no other options for her. The drugs had taken a toll on Jillian’s body. Her liver and kidneys were shutting down so it was just a matter of time. Two weeks later on September 19th, Jillian passed away. The doctors were amazed by her strength and determination to continue fighting. Her story doesn’t end here however. Her memory will continue to live in those lives that she touched. She will never be forgotten and she will always be loved.