Thank You from Jen.

5 years ago, I learned my Breast Cancer metastasized. I was terrified, angry, but not surprised. A close group of friends I met through the LFS Support Group reassured me that this was not the end, it was a beginning. We met for the first time in person November 2013, in the bar of the Longwood Hotel, Boston. We were the unruly gigglers in the back two rows of the LFS Conference. We reached out to others on breaks, letting them know about our online support group. We shared laughs, tears, stories of hope, stories of loss. We were going to live LFS together, and help others along the way.

I had been to the first LFS conference in 2010 at the NIH. The experience was overwhelming, thrilling, and life changing. I met Dr. Joseph Fraumeni. I absorbed the science like a sponge.  I met lifelong friends there, like John Berkeley, the first President of LFSA. We tried to navigate setting up a nonprofit for LFS while constantly cancering. We teamed up with others, like one of my best mutant friends, Trishia. So much to be done: awareness, advocacy, support, RESEARCH! Yet, it was 3 years later at the bar in Boston, through snarky jokes, expletives and many beverages, a smaller group of constantly cancering mutants decided to focus on the living and the need for support. Living LFS was born based on our values as a misfit group of mutants, with the hope of including all. We offered more than “just support”. We helped others meet up. I became President of this non-profit, with good friends and fierce advocates by my side. Living LFS is my Tribe.

 

In the past 5 years, Living LFS has been my focus. The women who started it with me, my sisterhood of traveling mutants. We laugh at inappropriate things and use the term mutant with the highest regard and endearment.  We set lofty goals – regular meetings, conferences, telling stories about LFS to raise awareness, advocating to helpothers live their best possible life with LFS. From each one of my living LFS sisters, I’ve learned valuable lessons that made my life better. I could not have gotten through the past years without them and you. We are all Living LFS.

 

Over these years, every single one of our board members dealt with cancer personally. There was very little medical quiet for any of us, yet we knew we were not alone. Growing up in a cancer family when there was very little support, it is very important to me that others have options for support.  I am grateful for the professionals who work so hard to help find our families better screening, treatments, and hopefully a cure. I believe whole heartedly in the need for advocacy and awareness. I also know the fear and loneliness that accompanies being diagnosed or living in a family with a hereditary cancer syndrome like LFS. It is overwhelming and frustrating to reach out for support to find there is none.

 

I know what it is like to live where there are not a lot of resources for families with cancer. I know what it is like to have to teach professionals how to spell Li-Fraumeni and pronounce it. I’ve been walked through clinic halls like the rare specimen. I’ve debated risks and benefits of screening and treatments until my brain hurt. (It was not a toomah!) I’ve taken the opportunity to talk with baby-docs and residents about LFS and being a parent of a cancer kid. I’ve spent months calling to schedule appointments, fix billing issues and know friends who have rooms full of paperwork that needs follow up.  Through it all, the most resilient people I’ve met are those living LFS.

 

I know what it’s like to walk into a room full of people and feel absolutely alone until another mutant starts chatting and it’s like you’ve known each other your entire lives. I’ve wished and prayed for B9 for more biopsies on more friends in our support group than most people do in their lives. I’ve laughed at poop jokes and crazy medical happenings and the occasional funeral story. I’ve cried with friends out of fear and loss. I’ve compared scars and chemo craziness.  I’ve been hugged so hard I know broken pieces stuck back together. I’ve learned so much over these years, way more than I shared.  I know there are others like me and I am not alone.

I cannot possibly thank every individual here who gave me back confidence when I doubted, picked up the reins when they fell and guided the team with our mission, towards our vision. To each person who sought me out for a hug, who champions for so many different cancers we face, for our children. For those who do it quietly and do the things no one else wants to do, I see you, thank you.  I must give a huge Thank You to Greg Harper for accepting the nomination to take over as President of Living LFS. He  already dedicates so much time and energy to our community, I am excited to keep working with him on upcoming support initiatives. Like previous founders and board members, once you are living LFS, always living LFS.  I am not leaving, but I need to focus on some personal things – and I can do that, knowing the organization is in good hands.

It is time for me to share Living LFS. Although I am stepping down as President, there are so many good things ahead for us and I will always be a part of the organization. To each and every new friend I’ve made through living LFS, thank you. For giving me support, personally and professionally. For every T-shirt sale, donation, fundraiser, card. Thank you for your time, your kind words, late night calls, messages, long distance visits and shared experiences. Thank you. For helping me create something special. Thank you for helping me LIVE.

 


Li-Fraumeni in the movies

by Andi Last  –  Sean Hannity and Hercules have made Travis Tritt the first person to ever say the words “Li-Fraumeni Syndrome” in a major motion picture.

Back in 2014, LFS was used in a plot line on the TV show, Grey’s Anatomy. Ann Ramer recapped the episode here. For a condition as rare as ours, this was a big deal in the LFS community.

On October 27, 2017, Let There Be Light was released in movie theaters across the country, bringing LFS to the general public once again. (Thank you Susan Frary for letting us know!)

Fox’s Sean Hannity is executive producer of this faith-based film that stars Kevin Sorbo (Hercules, Andromeda) in his directorial debut, and real-life wife Sam Sorbo. Sam Sorbo also co-wrote the film with Dan Gordon, screenwriter on movies like Passenger 57 and TV shows like Highway To Heaven. SPOILER ALERT: If you haven’t seen the film and are wanting to, you may want stop here, there are some details mentioned below about the plot.

Let There Be Light movie posterDr. Sol Harkens (Kevin Sorbo) is a celebrity author and the world’s most famous atheist as a result of the death of his 8 year old son, Davey, from a brain tumor. That genetics could be involved is teased early in the film in Harkens’ debate with a Christian cleric. Harkens says, “I’m willing to say my son’s death was just plain bad luck, a quirk of genetics, a bad roll of the cosmic dice, or maybe some corporate villain who poisoned the water.” He says if he were a praying man, he’d pray to see his son one more time, but that would mean praying to the very so-called God that killed him.

Harkens is estranged from his Christian wife, Katie (Sam Sorbo) and their remaining two sons (played by the couple’s real-life sons). With his life spiraling out of control, Harkens drives drunk, has a car accident, and is clinically dead for 4 minutes. In that time he indeed sees Davey again. Davey tells his father it isn’t his time, and “Let There Be Light.” Harkens returns to consciousness a changed man. The world’s biggest atheist finds God. The Harkens make plans to remarry – and to fulfill Davey’s request by creating a LTBL phone app to send light across the world to Heaven on Christmas Eve, with Sean Hannity as their media partner. The family seems to be back on their way to happily ever after as Christmas nears – until tragedy strikes again.

Katie has a seizure just like Davey’s. In the hospital the next morning, a doctor (played by country star Travis Tritt) comes to talk to the couple. He says, “We’ve had a chance to study the MRI and the CT scan, and we’ve gotten a pretty detailed look at your blood work.” Sol asks for the doctor’s specialty. Upon learning that the doctor is an oncologist, the Harkens understandably freak out. Katie cries, “It was me, wasn’t it? I gave it to him, didn’t I, Doctor? I gave our son cancer.” The oncologist tells her no. He says, “the blood work indicates that you have Li-Fraumeni Syndrome. People with Li-Fraumeni Syndrome are susceptible to various types of cancer, including brain tumors.” They discuss her prognosis and options, then the family goes on to make the most of the time they have left together.

In one scene, Katie tells her boys that whatever happens to her is God’s will, that she doesn’t believe in death, that it’s like she’ll just be in the next room. Katie dies in Sol’s arms on Christmas Eve as the world shines their LTBL lights to heaven and her family sings “Silent Night.”

Of course, Let There Be Light isn’t at all intended to be a primer on Li-Fraumeni Syndrome. Like with the episode of Grey’s Anatomy, there were inaccuracies due to time constraints. That LFS is inherited is implied when Katie dramatically asks if she gave her son cancer, but that the oncologist vehemently tells her no confuses the fact that LFS is indeed inherited at least 80% of the time. Genetic testing was never mentioned. Genetic test results aren’t available for next-day delivery – at least not yet. Maybe some day. Mentioning that the other two sons have a 50/50 chance of also having LFS and asking about family history would’ve been a responsible way to educate about the condition, perhaps even prompting audience members to wonder about their own family history, do more research and consider genetic testing themselves. But the goal of this movie is simply to encourage faith in difficult times. Opening a whole can of realism worms that prevent the story from wrapping up with a bittersweet Christmas Eve bow wouldn’t help.

Li-Fraumeni Syndrome was simply  the tragic vehicle chosen to convey Let There Be Light‘s message of hope. Katie’s tragedy could’ve been completely unrelated to her son’s, and the story would’ve still held together. It makes me wonder if there is a true LFS story in the lives of one of the screenwriters. If so, it’s a story I would like to hear. In the meantime, I hope that Let There Be Light might turn on a light of recognition and awareness next time those movie goers hear mention of Li-Fraumeni Syndrome.

UPDATE: The day after this blog post was released, I received a message from Dan Gordon, the co-screenwriter and producer for Let There Be Light, and we now have our answer: Dan’s brother had LFS. Dan was kind enough to grant me an interview for the Learning Li-Fraumeni Syndrome podcast. I’m so grateful to Dan Gordon for sharing his very personal story, and helping us bring awareness to LFS!

Read more real stories of hope from real Li-Fraumeni Syndrome families on this blog, and on our Facebook page.

#LetThereBeLight #ShareTheLight