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Tony Capecchi

Woodbury, Minn.

Running to Survive, and to Honor Those Who Didn’t

Maggie Folkestad’s father died of a desmoid tumor when she was 6 months old, but the 21-year-old college senior shares an undeniable connection with him: a desmoid tumor of her own.

Out of a million people, only four are diagnosed with the cancer-like tumor each year, but in her family, Maggie is the fourth consecutive generation to suffer from desmoids.  

“I wonder what it would have been like if my dad had access to the medical care I have today,” said Maggie. Desmoids are identified more effectively today, but there are still no known cures for the cancer-like tumors. The disease receives no research funding from the government because it is so rare.

“To me, desmoids don’t seem that rare because I live with them,” Maggie said. “I actually have three tumors, which are interconnected. The largest is the size of a softball.”

Maggie’s tumors were caused by Gardner syndrome, which is hereditary. The disease is characterized by polyps inside the colon, tumors outside the colon and the tendency to be passed down from one generation to the next.

The disease has taken Maggie’s biological father and her great uncle. It has also caused her to be poked and prodded for medical tests since she was a kid; colonoscopies started at age 10. When Maggie turned 16 and got her driver’s license, she developed pre-cancerous polyps which forced her colon to be removed. But for all the damage the disease has wreaked, it has failed to hinder Maggie’s spirit.

“It doesn’t change who I am, or how I live,” Maggie said. “I don’t let it.”

The Edina native is taking a stand, not only by continuing her education at the College of St. Benedict this fall, but also by putting together a team to run in the Desmoid Dash 5K on Sept. 19 to raise awareness and money for desmoid research. All monies raised at the Desmoid Dash will go directly to the Desmoid Tumor Research Foundation and the current study at Duke called “Collaboration for a Cure.”

The third annual fundraiser takes place at St. Thomas Academy in Mendota Heights at 8:30am on the third Saturday of September.

Last fall, Maggie ran in the race along with a handful of other desmoid survivors, including Matt Zechmann, who created the event in 2013 to raise money for research. “When I first had chemo I sat at home and I moped around,” said Zechmann, 31. “Then I realized there’s another level I could go to, and the Desmoid Dash gave me something positive to channel my emotions and energy into. Plus there’s a direct correlation between the money we raise and the research getting done.”

Zechmann and Maggie shared a doctor at the Mayo Clinic and have become friends and supporters of each other.

“You have to look out for each other,” Zechmann said. “It’s not about sharing war stories or comparing scars, it’s about having the knowledge that someone else has dealt with this same type of thing. Maggie is a genuinely nice, good person from a supportive family, and she’s been dealing with this thing since such a young age. I get strength in my fight from hearing about hers.”

As for Maggie, she is captaining a team at this year’s Desmoid Dash to help give back the support she has received since she was a teenager. “It always amazes me how much people are willing to help,” said Maggie, who wants to become a patient advocate at Children’s Hospital after graduating college. “The support I receive blows me away. It’s a weird feeling.”

While Maggie is remarkably comfortable with medical terms and tough realities––she candidly describes why surgery is not a viable option for her if her tumors take a turn for the worse––she struggles at times with the impact her disease has on her family.

“I don’t exactly feel guilty,” she said. “But having to put my parents through this isn’t something I like.”

Maggie’s mother, Sheila, marvels over her daughter’s grace. “I was so sad when Maggie was diagnosed because I knew what that could mean for her,” said Sheila, who buried her husband and her husband’s uncle in a one-month span. “It means so much to us to have the support of our family and friends. They have been so good to us throughout all of Maggie’s health issues.”

Maggie’s grandfather, Dave Ellingson, 80, is a desmoid patient himself. “I am proud of Maggie’s fortitude, and that her disease hasn’t diminished her wonderful personality,” he said. “Maggie is so much like our [late] son. She is so spunky and smiley and outgoing.”

“People always tell me my dad was a very fun and loving person,” Maggie said. “Even though I don’t remember him, I think I have a similar personality to him.”

Ellingson recalls a time when Maggie’s father was still alive and worked in Dublin, Ireland. Ellingson visited him in Ireland and they toured a castle. “My son was ahead of us on the tour and hid behind these big, formal curtains to jump out and surprise us, but he didn’t realize we could all see his shoes sticking out beneath the curtains.”

“Maggie has this fun personality, too, but she’s also a fighter. She’s going to graduate from college and do great things––she’d be a great patient advocate because she’s a good listener,” said Ellingson, who credits Sheila and her second husband, John, for how they’ve supported Maggie.

In Ellingson’s case, the support has gone both ways. “Maggie went to Mayo in 2009 and I held her hand as she laid in the hospital bed,” said Ellingson. “The next year, I had two heart attacks. I was in the hospital and Maggie came and held my hand and I said, ‘Maggie, we’ve changed roles.’”

Grandfather and granddaughter will be supporting each other on Sept. 19, as they participate in the Desmoid Dash.

“I’ve had one tumor removed, but I still have another desmoid tumor they can’t remove, and if that tumor starts to grow again, I don’t think the doctors know what to do,” said Ellingson, who lost his son and his brother to desmoids during a 30-day stretch. “I hope with more research they can eliminate Gardner syndrome and desmoid tumors.”

Maggie hopes the same, and is encouraging others to sign up for the Desmoid Dash 5K, or to donate online to the cause. You can form a team for the event, but most sign up to run or walk as individuals.

Meanwhile, the unusual connection Maggie shares with her late father remains a big part of her life, but she refuses to let it define her. “Our team is doing this run to honor my dad, and we’re also doing it for me, and for others with desmoids.” 

Click here to register for this year's Desmoid Dash. To make a tax-deductible donation to the Desmoid Tumor Research Foundation, click here. Please indicate your donation is tied to the Desmoid Dash. For more information on the event, visit DesmoidDash.com.  

Fishing in Paradise: Little Palm Island

Giant tarpon are swarming like sharks in the black water, devouring their prey whole. The predators leap out of the water in pursuit of their quarry––each splash so sudden and severe it startles me into flinching. The sun will not rise over the Atlantic Ocean for another two hours, but spotlights under Little Palm Island’s dock illuminate just enough water for me to spot a tarpon cruising for something to kill. I toss my bait out in front of the notoriously finicky fish, and it slowly swims toward it. 

My eyes grow wide as saucers as the tarpon inhales the pilchard a dozen yards in front of me and I set the hook as hard as I can. Tarpon are famous for their leaping ability, and this one is no exception. Hating the feeling of the hook in her front lip, she promptly goes airborne. The aerial assault she launches seems to wake every creature within earshot. It definitely causes my heart to jump into my throat.

I’ve never before hooked a tarpon, but I’ve seen the photos and videos and have read numerous stories about the coveted trophy. The marlin is the fish that battles Santiago for days in Hemingway’s The Old Man and the Sea, but tarpon is the species that Hemingway himself chased all over the Florida Keys––perhaps, as is rumored, at this exact island some 12 miles off the coast of Little Torch Key.

The tarpon’s combination of size and strength, along with its incredible reluctance to bite and its incredible propensity to get away, if by chance it does get fooled, is legendary. While pockets of anglers across the globe prefer different species for different challenges, it is not an unreasonable assertion to state that tarpon are one of the most coveted sportfish in North America, if not the world. The one on the end of my line is going ballistic. 

I repeatedly “bow to the king” as I’ve read you’re supposed to do, leaning forward and extending my arms each time the tarpon leaps. My goal is to give the fish slack in the line, and to avoid pulling the hook out of its tough mouth as it flies through the air shaking it head violently. I recall a conversation at dinner two nights prior, up in Islamorada, with an angler who confessed to me that he’s hooked 76 tarpon but hasn’t landed a single one. The silver fish jumps again––much farther from me now than when I first hooked it ten minutes ago––and I wonder if I will begin my tarpon career 0-for-1. 

But then the tides turn, and with adrenaline on my side I outlast the prized fighter and drag the fish to shore. Wow! My arms shake; I struggle to lift the monster, and I know the moment will last in my head for years. A grin spreads across my face as I stand on the shore of Little Palm Island Resort & Spa holding the fish of a lifetime.

If there is a better saltwater fishing resort on the planet than Little Palm Island Resort & Spa, I have yet to see it. Little Palm was once the favored fishing camp for old-time movie stars and U.S. presidents, dating back to Harry Truman. In the past couple decades, the 5.5-acre island resort has opened its doors to a select number of discerning guests, offering 30 two-person, thatched-roofed bungalow suites with ocean views and private beaches. 
 


 

The ironic part, however, is that the resort is so plush that travelers who disdain fishing herald it as the ultimate relax-and-do-nothing getaway, while hardcore anglers simultaneously hale it as the premiere fishing resort. Travel + Leisure and Conde Naste consistently include Little Palm Island Resort and Spa in their annual gold list of the world’s top hotels; meanwhile, North American Fisherman last year named the resort one of the five best fishing destinations in the world.

Put another way, Little Palm Island is paradise island … surrounded by fish. Catching the tarpon was just one of numerous memorable moments I encountered fishing during my 4-day stay in May. Fittingly, my fantastic angling experiences stemmed from a combination of the resort’s unparalleled fishing action and its unparalleled service and amenities. They treat you like a celebrity, and they put you on some of the best fishing in the Western hemisphere. 

On my first morning, I took out one of the 20-foot Twin V Catamaran boats Little Palm Island makes available to guests at no extra charge. The boat’s powered by a 90-horsepower Suzuki outboard, complete with top-of-the-line Lowrance electronics. 
 


Action was fast that morning, with big grouper, permit, lots of snapper, and an exciting follow by a 4-foot long barracuda that trailed my chum bag for several minutes and chased two of the fish I caught.
 


 

But the coolest thing that morning didn’t even involve me catching a fish. I zipped out a mile or so from the island––which again, is a dozen miles from the Keys to begin with––and started some open water drifting. I was in the middle of nowhere, with the sun shining down on the turquoise water with nothing around me but the flat horizon. 

All of a sudden, a huge spotted eagle ray jumped completely out of the water no more than 20 feet from my boat. The giant sting ray came crashing back down with a huge splash––just in front of it was a long, skinny baitfish being chased. To witness this ray, with no sign of civilization in sight, was awesome. 

The next morning fishing off the dock produced one of the hottest fishing stretches of my entire life, kick-started by catching a solid black grouper. I released the fish, dropped down my bait again, and immediately caught a large pompano. I released it, tossed my shrimp back out, and promptly caught a mid-sized silver fish I couldn’t identify. I snapped a photo, released the fish, and dropped my line back in the water for a fourth consecutive, immediate bite. This time, I landed a decent mutton snapper, followed by a mangrove snapper on my fifth cast. 
 



So it went, for eight consecutive casts with eight consecutive fish, each one biting within ten seconds of my bait hitting the water. During this stretch, I proceeded to catch ten fish in 12 casts; during the two casts on which I didn’t catch fish I immediately had strikes––I simply missed the bite and lost my shrimp. The west-side dock at Little Palm Island extends into deep water and holds incredible quantities of fish, so by “casting” all I had to do was drop my shrimp straight down from the dock, wait five to ten seconds, and get a bite. 



Adding to the thrill was the variety of different species I hauled in during this flurry––including a number of species I had never before caught. By the time I walked back to my bungalow for breakfast, I had already caught over 40 fish! How cool is that?

Little Palm Island offers a variety of fishing guides you can book, and I saw one guest return after a day with his guide with a +100-pound swordfish in tow. All the fish I caught, however, came on my own, unguided, which is a testament to both the quality of fishing in the area and the quality of helpful staff at the resort. 

Ronaldo was the dock-hand for my first couple days, and this soft-spoken Central America native was a fountain of knowledge. He graciously walked the docks with me and pointed out hiding snook, tarpon, sand sharks and several colorful parrotfish.



He taught me how to fish for sharks, and when and where to search for them. When I managed to catch a shark while fishing on a stand-up paddleboard, Ronaldo hustled over with a pair of pliers and unhooked it for me. 
 

“Little Palm boasts a very tenured staff that is accustomed to serving high profile and celebrity guests with the utmost privacy, as well as quiet and gracious service,” said Bill Foster, Area Director of Sales & Marketing at Noble House Hotels & Resorts. “It’s a well-loved and well cared for family owned business where every detail is approved from owners themselves.

The dock-hand the next couple days, Nathan, was perhaps the kindest, most helpful person I met during my week in Florida. Nathan explained to me that I likely wouldn’t trick a giant tarpon with shrimp, or with the particular line and leader I was using. So, Nathan set me up with low-visibility line and a high-end rod-and-reel combo (Little Palm provides all the fishing gear you need at no additional charge). Then he gave me another light-weight rod with a Sabiki rig he personally tied on for me to catch pilchards to use for bait.

Nathan was so patient in answering my endless questions and explaining all the detailed info I needed to apply these new techniques. I think he was the most excited guy on the island when he learned later that I had caught the big tarpon, which was all thanks to his help. 

Indeed, I still smile about it now when I look back. The tarpon was just the cherry on top––the fish of a lifetime that capped off what would have been the trip of a lifetime, even had I not caught a thing.

The website for Little Palm Island Resort & Spa is www.littlepalmisland.com. For more information, call 800.343.8567 or email getlost@littlepalmisland.com.

 



My Costa Del Mar sunglasses helped me see through the water and spot fish that were hiding under the pier.

For tons of information on other fun things to do in Florida, including great spots to stop along the Keys as you drive to Little Palm Island's base camp on Little Torch Key, go to VisitFlorida.com or Fla-keys.com.

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