Jill’s Legacy

11May15_MG_9651When 22-year-old U.C. Berkeley student and athlete Jill Costello lost her one-year battle to Lung Cancer in June 2010, friends and loved ones vowed to remember her and her dream to BEAT LUNG CANCER. Enter “Jill’s Legacy,” an all-volunteer subsidiary within the Bonnie J. Addario Lung Cancer Foundation (ALCF) and the only young group dedicated to ending Lung Cancer for all patients by showing the world that young, never-smoking athletes can get Lung Cancer.

As an Advisory Board of ALCF made up of empowered young professionals personally touched by Lung Cancer, the group’s mission is: to be the driving force to significantly increase the stagnant 15.5% survival rate of patients diagnosed with the world’s number one cancer killer, Lung Cancer; to raise funds for research; and to combat the stigma associated with Lung Cancer as a smokers disease. FACT: Nearly 80% of newly diagnosed patients either quit smoking decades ago or never smoked.

Each year students at college campuses across the nation use their lungs by joining a Jill’s Legacy team and jogging in memory of Jill and her commitment to beat Lung Cancer for people of all ages.

For more information please contact Andrea Parks / andrea@lungcancerfoundation.org

About Jill’s Legacy

JLBoard_webJill’s Legacy is an Advisory Board to the Bonnie J. Addario Lung Cancer Foundation made up of promising young professionals who have each been personally touched by Lung Cancer. The Board has been called Jill’s Legacy in memory of 22-year-old college student and athlete at U.C. Berkeley, Jillian Costello, who lost her battle with Lung Cancer in June of 2010, just one year after being diagnosed.

The group’s mission is simple: to be the driving force in significantly increasing the stagnant 15.5% survival rate of the world’s number one cancer killer- Lung Cancer.

Many people don’t know that Lung Cancer is the biggest cancer killer but still the least funded. It kills more people than breast, colon, liver, melanoma and kidney cancers combined. And, for every $9 spent on Breast Cancer research, $1 is spent on Lung Cancer in the U.S. Much of this is due to the stigma associated with Lung Cancer that it is a smoker’s disease. This is not the case! In fact, nearly 80% of newly diagnosed Lung Cancer patients either never smoked or quit smoking decades ago.

Jill’s Legacy is out to BEAT Lung Cancer big time!

All money raised through the groups fundraising campaigns is going directly to young researchers and Lung Cancer awareness movements.

For more information please contact Andrea Parks / andrea@lungcancerfoundation.org

Jillian Costello

“Dream of great things and always believe what you want is attainable.”
- Jillian Costello, UC Berkeley graduate, student-athlete, and lung cancer victim.

JillCostello_webHer dream, “Beat Lung Cancer.” Jill’s story has inspired young adults and college students across the country to band together as “Jill’s Legacy” and see to it that Jill’s dream is achieved for all Lung Cancer patients.

In June 2009, Jill was diagnosed with stage IV Lung Cancer. As a 21 year-old student-athlete and non-smoker, she was given a challenge no one ever thought she would face. Jill quickly rose to the challenge and set out to raise funds and awareness for the fight against the world’s #1 cancer killer, lung cancer. Jill had three main goals: graduate from UC Berkeley, lead Cal’s Women’s Rowing team to win PAC-10 and NCAA championships, and beat lung cancer. In May 2010, Jill graduated and led Cal’s varsity eight boat to win a gold medal at PAC-10s and silver medal at NCAAs. On June 24th 2010, Jill passed away. She wasn’t able to beat lung cancer for herself, but her legacy may help others beat the disease. Enter: Jill’s Legacy. In late 2010, a group of empowered young adults, largely made up of Jill’s closest friends and loved ones, formed Jill’s Legacy.

Jill’s Legacy is an all-volunteer sub-entity of the Bonnie J. Addario Lung Cancer Foundation (ALCF) created to mobilize young people to erase the stigma of Lung Cancer and raise funds for research. As the young people’s representatives of ALCF and the only young group for lung cancer, Jill’s Legacy has raised more than $800,000 since it launched in early 2011. The group has also received grants to send two representatives to the IASLC Lung Cancer World Conference in Amsterdam this year. Jill’s Legacy is making a difference in the fight against lung cancer and plans to host runs at Tulsa University, Cornell University, and the University of Washington later this year. “The members of Jill’s Legacy have no patience or time for a stigma that has kept Lung Cancer in the shadows for over 40 years,” says Sheila Von Driska, ALCF Executive Director, “I believe Jill’s Legacy is revolutionizing the way society views lung cancer and because of them, we’re going to witness a rapid intelligent change in the survival rate of Lung Cancer.”

Young Lung Cancer Survivor Stories

Taylor Bell
Growing up it was my dream to play soccer in college. I got that chance when Coach Rob Donnenwirth asked if I would like to come to ECU to play soccer. When I got to ECU, I bonded with my teammates, loved my classes, and met some really awesome friends. The only problem was that I wasn’t performing at the level that I needed to on the field. I failed fitness test after fitness test and I was constantly physically exhausted. I had numbness and tingling in my toes and was having some trouble breathing when I exerted myself at a high level. Other than those little symptoms, I felt great!

After several failed attempts to pass fitness test and always being tired we came to the decision that it might be a good time to run some medical test to see if we would figure out what was wrong. They found nothing. I convinced myself to think that I was just burnt out from the game. After a year of frustration and complications I made the hardest decision of my life to stop playing soccer. I still had the same symptoms from before when I was exercising but not at the level it had been.

Two years later, in October of 2007, I presented to the emergency room with complaints of a lower abdomen pain where I thought my appendix was rupturing or having cramps but my sister insisted that female cramps were not that bad. They took me in and did a CT scan of my abdomen and my lungs showed up on the scan. They told me that my ovaries did have some small cyst on them but that they thought that they were fine, but wanted to inform me that I had about a 3cm mass on my left lung. My heart sank!! Lung cancer runs in my family, but surely I didn’t have lung cancer or a tumor. I was 21 years old and a former college athlete.

After the night at the hospital I went home. The next two weeks we spent in doctors’ offices all over the state trying to see what this “mass” really was. No doctor thought it was possible for it to be lung cancer. After several test I finally got my answer when meeting with a surgeon. That doctor’s appointment was when I went into shock. He walked into my room and said, “So I hear you have lung cancer.” I freaked out… no one had said the word lung cancer yet because no one was sure.

My doctor told me that the mass was pretty large but that it was going to have to come out, but he felt comfortable that he would be able to do the small incision and get it all out. The only problem was that I was really sick. After the first bronchoscopy I developed really bad pneumonia, basically to the point that I couldn’t walk. So we had to wait to have my surgery until I could pass a breathing test to prove that my lungs could handle the surgery. I finally got well enough to have the surgery. On November 14, 2007, I had a VATS pneumonectomy.

After the surgery I was a mess. The chest tube was HORRIBLE!!!! I was in the ICU for 2 days and then moved to a step down unit. I had the chest tube in for about five days! They made me walk around the halls and I HATED it. It was so miserable.

I went home the day before thanksgiving, and went back to college after the New Year. It was hard going back to school because all my friends really didn’t understand. It was hard for them also, because on the outside I didn’t look like I was sick, I looked like the normal “Taylor”. But on the inside I was in a lot of pain.

It was also hard because it’s kind of an emotional roller coaster. I looked fine but I had just had a MAJOR surgery. I wanted to go on spring break, but I was nowhere well enough to go. It was depressing. I wanted to be like everyone else and have a good time, but I knew deep down my body couldn’t handle it.

Spring break week was probably when the fact that I had lung cancer hit me. The months before it all happened so fast I didn’t even think about it… it went from diagnoses, to surgery, to recovery, to class starting. One thing after another with really no time to think about what I was going through.

I was a mess that week. I didn’t want my parents or my friends to see that I was upset. I think the hardest part was that I looked fine. I didn’t lose my hair I didn’t have a big scar… I looked normal. I was still in a lot of pain, and I was so upset that I couldn’t be with everyone. Cancer is kind of strange because you have a lot of thoughts that go through your head. You think a lot about “why me”? Or what did I do to deserve this. Spring break week… I thought a lot about it… and that’s when I realized… This happened to me because I am a strong enough person to handle it. I made it through and I am ALIVE… and that’s when I realized… I HAVE to do something to speak up for everyone who has lost his or her life.

I now do as much public speaking and advocacy about lung cancer as I possibly can. I am a member of Jill’s Legacy, which is an organization that was formed in honor of Jillian Costello who like me was a division 1 college athlete who was diagnosed with lung cancer at the age of 21. Jill fought with such grace and determination. When she passed away a group of friends decided that we needed to do something in her honor. She didn’t just want to beat lung cancer for herself but her goal was to beat lung cancer for everyone. I can’t think of a better place to donate my time and advocacy to.

I think one of the greatest obstacles with lung cancer is getting people to break the stigma. Every time I say that I had lung cancer the first words I hear are “Oh you smoked?” Well no actually I haven’t, and I have never been around second hand smoke either. Then their next question is… oh it must run in your family then… and then my answer is well yes it does, but there is very little funding to do research to tell if there is a genetic link.

Breaking that stigma is hard. When someone tells you the have breast cancer or they had brain cancer… they don’t ask any questions as to how they got it. Why do they do it with lung cancer? No one deserves this disease… whether they smoked or not and everyone deserves the same compassion.

My main goal is to get the message out that this can happen to young people and people who have never smoked, it can happen to anyone. Lung Cancer does NOT discriminate. And even if they have made the choice to smoke at some point in their life they still deserve the same compassion as anyone who is fighting for their life.

And that lung cancer deserves way more funding than what it gets right now!! When I was first diagnosed I used to think “why me” now I think “why not me?” My diagnosis has shaped me into such a strong person and has given me the avenue to make a difference in people’s lives that have to fight this battle as well.

 

Ingrid Nuñez 
I’m not sure I ever knew that Stage IV lung cancer existed. I had never linked a non-smoker to a person who could potentially be diagnosed with lung cancer. I never even knew there were stages to lung cancer let alone a scary, further progressed, stage IV, but in March 2011, I was told I had non-small cell adenocarcinoma of the lung (Stage IV). I was an 18 yr. old freshman at Cornell’s Hotel School without a care in the world except the dream to become a pastry chef when all of a sudden I had cancer.

The diagnosis came as a complete shock to my family, my friends, and me because I’ve never smoked and have always been active and healthy.

It was the beginning of February, back for my second semester of college, when I felt a small lump just above my collarbone on the left side of my body. It never bothered me and I felt fine, so I decided a whole month and a half later to get it checked out. What I thought was a small harmless bump turned out to be something much more. My official diagnosis was given to me on March 30, 2011, a whole two weeks after basically living at the hospital. When my doctor finally received the results from the incisional biopsy, I was confused. At first we thought it was Hodgkin’s Lymphoma. I was told a few rounds of chemo would fix me up in no time. But to someone who has never even met another person with cancer, the sound of that was terrifying. I met with my new “lymphoma oncologist” who was going to work with me while I battled this cancer. I was starting to really like him until the results of my biopsy came back. This doctor came into my exam room and just stared blankly at me. “Ingrid, I am so sorry, but I can no longer help you. You need to go upstairs to our lung cancer floor. The test results show you have lung cancer with masses not only in your lungs, but also in your liver, abdomen, and pelvis.” I felt like I couldn’t move. I didn’t know what to say. I couldn’t even look at my parents because I knew none of us would be able to hold it together. The first few days were the hardest for me because I didn’t know what to expect, I didn’t know what anything meant.

At first I assumed my diagnosis was extremely rare, I thought I was some kind of “freak of nature” which my family and I now like to jokingly call my cancer, but unfortunately, it is becoming increasingly common. The rate of young, non-smokers diagnosed with lung cancer is rising at an alarming rate. I soon found out I wasn’t the only person my age in the world in my shoes.

I immediately began chemotherapy and have had over 15 sessions ever since. I am still a full time student at Cornell, living my life as normally as I can, except for my tri-weekly excursions to receive chemo. As common as my cancer is becoming, I like to think of myself as a special case. Since I began chemo, I have had 4 full body scans to see the progress of my tumors. Every report I have received has brought me good news. My tumors continue to shrink with every round of chemo and I am positive this will go on until there will no longer be any signs of cancer inside of me. I pray every day for the morning when I will wake up cancer free.

Soon after my diagnosis I was contacted by Jill’s Legacy and the Bonnie J. Addario Lung Cancer Foundation and since then have partnered up with them to bring to Cornell University’s campus its very first Jog For Jill in Honor of Ingrid Nunez on September 25, 2011. We raised over $49,000 with plans of making it a yearly tradition to raise more and more each year.

Lung cancer statistics are scary. I have never smoked nor had any family member get diagnosed with lung cancer. There is still so much more to learn about this awful disease. My doctors and I still don’t really even know why this happened to me, which is why it is imperative that we raise funds to research this disturbing trend. The reason why I have partnered up with the Bonnie J. Addario Lung Cancer Foundation and the lovely woman of Jill’s Legacy is so we can beat lung cancer big time. I wish with all my heart and soul that with everyone’s help I myself will beat this cancer and also help pave the way for a cure.

 

Gabby Wilson
Gabby_Bonnie_webSix-year-old girls should be playing soccer, laughing with their BFFs, and daydreaming of days to come. When did little girls become the face of lung cancer? According to Gabby Wilson, at the ripe old age of 6, when she lost a lung to cancer. In 2007, Gabby was diagnosed with a rare form of lung cancer. She endured surgery, which left her with only one lung and a powerful message “Anyone can get lung cancer.” From the mouth of babes, “I didn’t even smoke!” Gabby declares. The Bonnie J. Addario Lung Cancer Foundation and Jill’s Legacy are working to get the message out there that you really don’t need to be a smoker to get Lung Cancer…look at Gabby!

Jill’s Legacy All-Stars

Adeeti Ullal: Ph.D. Candidate, Biomedical Engineering, Harvard-MIT Division of Health Sciences and Technology
I got involved with Jill’s Legacy after the wonderful team at ALCF helped to guide and support my family after my aunt, Susie Nagpal, was diagnosed with Stage IV lung cancer. She was only 46, had never smoked, and had just been elected to our city council. She passed away just 7 months later.

Her story is a surprisingly common one in lung cancer. There is no way to detect lung cancer early on, and once diagnosed, there are very few treatment options. Furthermore, the disease doesn’t just affect the patient; many family members suffer from PTSD (post traumatic stress disorder), 1-2 years after their loved one has passed away.

I volunteer with Jill’s Legacy because I believe we have the ability to make a difference for Lung Cancer patients AND their families. We are a multidisciplinary and passionate team who take on everything to improve patient care: from basic science and clinical research to health care policy changes and patient advocacy. On a day-to-day basis, I tackle Lung Cancer in the lab, working directly with patient samples at Massachusetts General Hospital. My ultimate goal during my Ph.D. is to develop a way to monitor treatment response in lung cancer patients. Together, we can Beat Lung Cancer!

 

Carly McCaffrey: Hosted Jog for Jill Georgetown and helped raise over $25,000
Georgetown sophomore Carly McCaffrey (El Granada, Calif./St Ignatius College Prep) took it upon herself to honor a rower she only met when she was a senior in high school, and never competed with, but was still so impacted by her story that she wanted to do something.

McCaffrey is a graduate of St Ignatius College Prep in San Francisco and is in the midst of her second season as a member of the Hoyas women’s rowing team. When she was a senior in high school, she had an opportunity to meet Jill Costello, a former rower from her high school who went on to compete collegiately at Cal.

In June 2009, she was diagnosed with stage IV lung cancer. Costello set three goals for her senior year – to graduate, help her team win its league title and compete in the NCAA Championships and to beat lung cancer. She graduated from Cal in May 2010, but passed away on June 24. In her memory, Jill’s Legacy was formed and this weekend, on Sunday, April 22, a Jog for Jill will be held on the Georgetown campus. The 5K walk/run, hosted by Jill’s Legacy, the foundation named in her honor to help raise money for lung cancer research, is one of seven similar events to be held across the country.
Though she is far removed from her hometown area and never had the chance to compete with her, McCaffrey said the meeting she had with her compelled her to do something.

“I decided to organize Jog for Jill Georgetown to support Jill’s legacy and cause from here in Washington,” McCaffrey said. “I felt out of touch with Jill’s community on the West Coast and having heard of events held at other campuses, I decided the best way I could support not only Jill’s fight, but the fight of all those affected by lung cancer, was to hold a Jog for Jill here at Georgetown.”

 

Julie Dick: Hosted Jog for Jill Ohio State on June 2nd and raised over $10,000
In the spring of 2011 The Ohio State Women’s Rowing Team came into contact with members of Jill’s Legacy at the NCAA Rowing Championships. We’d had Jill’s story hanging in our locker room for months, and were thrilled at the opportunity to support her teammates and assist in the fight to beat lung cancer. The travelling team donated portions of their per diem money that weekend, and we began talking about the possibility to bring a Jog for Jill to Ohio State almost immediately.

Buckeye nation has always been an incredibly philanthropic force, and we knew if we brought the Bonnie J. Addario Foundation to them, we’d see an incredible outpouring of love and support. My team, the whole student-athlete population and Greek community here at Ohio State identified closely with Jill and her teammates. Many of us were also motivated after being personally touched by lung cancer. My family lost a great man, father, uncle, brother and husband, Thomas O’Dell, to the disease just two years ago.

For so many reasons, lung cancer research is near and dear to our hearts. Hosting a Jog for Jill 5k was an awesome opportunity for all of us to express our respect for Jill and her teammates, honor the memories of our loved ones, and raise money for the greatest goal, beating lung cancer.
It’s been a pleasure to work with Jill’s Legacy, and we look forward to supporting them for a long time to come. Beat Lung Cancer and Go Bucks!

 

Rachel Wright: Hosted Jog for Jill Gonzaga University and raised over $5,000 
Gonzaga women’s rowing team was inspired by the movement that Jill Costello began, to bring awareness to lung cancer and wanted to help continue her legacy by hosting a Jog for Jill in Spokane. I was honored when our coaches approached me about hosting Jog for Jill at Gonzaga and have the opportunity to be involved in planning and spreading the word about lung cancer.

Bringing awareness to lung cancer is important because of how it is thought of as a smoker’s disease. Jill’s story inspired me personally because I never thought that a 22-year-old athlete could be diagnosed with lung cancer. I am excited to be involved in this movement and make a footprint in the path to conquer lung cancer. I cannot wait to see the success that will come from having a Jog for Jill in Spokane. I am very thankful to apart of Jill’s Legacy.