Portraits in Courage: Fuzzy on a Mission

Tucked inside the One Wells Fargo Center in uptown Charlotte, you’ll find our next featured “Portrait of Courage”. She’ll be perched with a smile behind the register — and firmly in command — at the Omnibus Gift Shop. Her name is Kelly LaFlash — known to her family and friends as “Fuzzy”. She works hard each week managing all aspects of this cards and sundries outfit and serving her long-time customer base. And while she does that job really well, she is also on an important mission each day that’s very close to her heart.

When I sat down with Fuzzy it was instantly clear that she was on a mission. She wore a childhood cancer awareness sweatshirt adorned with gold ribbon pins and cancer buttons. Her wrists were covered in silicone bracelets sporting messages of hope and healing. There was no mistaking her billboard of passion for childhood cancer awareness. Why so visual, you ask?

Fuzzy was diagnosed with metastatic Rhabdomyosarcoma at the tender age of 14, after some persistent nosebleeds, coughing, and colds. She also had a lump on the side of her neck. It was during a related tonsil and adenoid surgery that the surgeon discovered a tumor in her nasopharynx. An intense chemotherapy and radiation treatment schedule followed, which led her family to give her the nickname “Fuzzy” (like the nursery rhyme Fuzzy Wuzzy) as her long locks fell out.

It is truly miraculous and joyful knowing that Fuzzy is with us today as a 34-year survivor. WOW! And with that incredible statistic comes some important life lessons that she’d like to share with all of us.

Childhood cancer research receives very little funding, so all of us can do our part to make a critical difference. I know firsthand that every penny does count! Fuzzy maintains a donation jar on her checkout counter at Omnibus, and her loyal customer base throws in a bit of change here and there for whatever the current fundraiser is (She raises money at any given time for CureSearch, the Jeff Gordon Children’s Foundation, Still Brave Cancer Foundation, St. Baldrick’s Foundation, Isabella Santos Foundation, Claire’s Army, Kick-it for Kids’ Cancer, Cookies for Kids’ Cancer, and the Paula Takacs Foundation). These random money tosses into her jar have resulted in approximately $6,000 in donations to these nonprofits over the last 5 years! Simply remarkable!

Fuzzys Counter at Omnibus

 

  • As a childhood cancer survivor, I’ve learned along the way to try to conquer my fears and to never lose my sense of humor!  Fuzzy admits that anxiety and fear can easily become your steady sidekick – as fallouts from being a long-time survivor. She tells me she is much more confident many decades later and is most proud of pushing herself to learn how to drive, take to the dance floor, and ride in a helicopter in her thirties. She also reminds kids to find joy in their sense of humor throughout their cancer journey. “Most people have one of those days. I have one of those lives,” she says with a wink, but then quickly adds this quote: “Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” — Vivian Greene

 

  • The most significant life lesson I can convey is that I choose to live this life of mine with a positive attitude. This quotes says it perfectly, and it has literally changed my life:  “The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company…a church…a home.The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past…we cannot change the fact that people will act in a certain way…we cannot change the inevitable.The only thing we can do is to play on the one string we have, and that is our attitude.I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you; we are in charge of our attitudes.”          — Chuck Swindoll

 

So I hope you’ll drop by the Omnibus Gift Shop and see Fuzzy one of these days. Drop a coin in the jar, give her a hug, and tell her that she is an amazing Portrait of Courage.

Portraits in Courage: Dr. Corrie Painter

What do you get when you combine a brilliant biomedical scientist, a sarcoma diagnosis, and a mother load of courage? Answer: Dr. Corrie Painter, The Angiosarcoma Project, and our inaugural Portraits in Courage post.

I am in awe of her story, and you will be too. Although it starts as a life with a wonderful husband and two very young girls, turned upside down by a devastating cancer diagnosis, trust me when I say that this journey takes those lemons and squeezes out an astonishing truckload lemonade.

Corrie was diagnosed with primary breast angiosarcoma in May 2010 – at only 36 years old. This rare sarcoma (Nothing like being diagnosed with a RARE form of a RARE cancer. Gosh, I’ve learned to hate that word.) is diagnosed only 300 times per year globally, which strikes in the lining of the blood vessels of the body. It took numerous biopsies over a 5-month period to nail down a precise diagnosis and form a treatment plan – which Corrie sadly points out is way faster than normal for most angiosarcoma patients. She credits her surgeon at Dana Farber for making the call to perform a more radical surgery that “saved her life” since initially she was given months to live.

So how did Corrie learn about her disease and find support for this rare cancer? Being a scientist, Dr. Painter instinctively turned to PubMed, but these academic publications devastated her as she read the depressing bits of data. She also did Internet searches to try to find others with the diagnosis. When she did find names of people who were reaching out for connection and contacted them, she rarely got a response. That’s because she would find their obituary. Corrie said that each time “it was a black hole that opened up next to her and sucked out every ray of hope.”

In a last ditch attempt to learn and connect, she turned to Facebook and found the Angiosarcoma Cancer Group – formed by Lauren Ryan – with 10 people in it. Although a tiny group, they seemed to house the world’s knowledge of this disease. They knew which doctors to see. They knew side effects. Most importantly, they were all ALIVE! “We were instantly bound by something far greater than you can experience with another person outside of the bond of marriage and parent/child relationships,” says Corrie. (See https://www.facebook.com/groups/101899709845272/)

Lauren Ryan had also formed the Angiosarcoma Awareness Foundation, and together these tightly bound friends continued to nurture the nonprofit and the Facebook support group together. Corrie took the advocacy baton from the hand of her beloved friend in 2014 when she sadly passed away, and has continued the work on behalf of Lauren and all other sufferers. Today there are over 2,000 people in the Angiosarcoma Group on Facebook, and 100-200 at any one time actively exchanging information and supporting each other.

But Dr. Corrie Painter did not not stop there…not by a long shot…

Corrie realized that there was a potential treasure trove of data inherent in the interactions through Facebook. She was determined to find a way to look at these cases and begin generating data as to the underlying how’s and why’s of this cancer. She completed her PhD, then a fellowship in cancer immunology, and decided to pursue a career focused on patient advocacy and science.

And, now? Today, Dr. Painter is a grateful angiosarcoma survivor of 6 years (in remission!). She is the Associate Director of Operations and Scientific Outreach for the Metastatic Breast Cancer Project at the Broad Institute of MIT/Harvard. Starting in October of 2015, patients with Stage 4 metastatic breast cancer began authorizing the collection of tissue, saliva samples, and medical records for cataloging, study, and genomic testing. Already more than 2,000 patients from 50 states have stepped forward to advance research through this social media driven approach (see www.mbcproject.org for more information)! This project has been very well received by patients, who feel “first in class” in bringing translational medicine directly to them for the first time. Why? They feel connected to the entire process. They were engaged in things like website build out and the patient questionnaire. They send back personal notes and saliva kits that their children color directly to scientists – making everyone feel personally connected to each other and galvanized to the project. It has far exceeded everyone’s hopes and expectations. This same approach will be launched on September 1st for angiosarcoma, and Dr. Painter and the sarcoma community couldn’t be any more excited!! The Broad hopes to take this same direct-to-patients initiative and apply it to this rare cancer that couldn’t otherwise be studied thoroughly. She is hoping to get 50-100 people living with the disease to go through the whole process of getting clinical information, tumor samples, saliva and perhaps blood. She wants to engage everyone still alive (or those family members who lost loved ones) to collect information in perpetuity in order to gain a clinical and genomic understanding of angiosarcoma. And our bet is on her! (See https://www.facebook.com/groups/1556795987968214/ to read the direct input by patients, families, and advocates to the Broad scientists as this Angiosarcoma Project continues to develop.)

As a scientist and as a patient, Dr. Painter believes that we need to have models where everyone at the table is learning from each other – patients, pharmaceutical companies, payers, doctors, and designers – and converging all of this into a better research system. Her vision at the Broad Institute is based upon a “learning health system”, where information isn’t lost, where patient experiences don’t happen in vein, and where we can all learn from each other because data isn’t silo’d off. Ultimately, resulting in better health outcomes. In fact, only a few weeks ago Corrie was personally invited by Joe Biden’s office to attend a Summit of the recently announced Cancer Moonshot initiative. As part of the big data working groups, she gave significant input about including research in the continuum of healthcare, including patient visit data being available for use in future clinical trials and other translational research in our country. “The healthcare system needs to become a learning system and not just a reactionary system,” says Dr. Painter.

All of us at the Paula Takacs Foundation honor Dr. Painter’s courage – not only to battle for the sake of her own health – but to bravely take center stage in the advancing of cancer research for thousands of other sufferers. We proudly stand behind her efforts, so stay tuned for updates on the Angiosarcoma Project later this year.

So is that some awe-inspiring lemonade, or what?

The Paula Takacs Foundation for Sarcoma Research | Charlotte, NC 28271 | (704) 516-5113