Waging a Different Battle
Green Beret Gets Transplant Help Through Moffitt/USSOCOM Partnership
By Ann Miller Baker
In his career as a Green Beret, Art has experienced things he can’t talk about. Experiences so sensitive that the military won’t allow us to use his last name. But the one experience that brought Art to his knees was not in service to his country.
“They can tell me I’m going to jump into some hotbed, infested zone and it’s going to be wild,” Art says, “and that would not compare to a doctor in a quiet, well-lit room telling me that I have an aggressive form of cancer called acute myeloid leukemia. That just sunk me. There was no comparison.”
A GRAPEFRUIT-SIZED TON OF BRICKS
In the spring of 2015, Art was returning from a deployment in Afghanistan just in time to witness the birth of his second child, daughter Emily. Things were great, says wife Sarah. “Art came home in the best shape he’d ever been.”
“You know how they say something hits you like a ton of bricks?” Sarah asks with a crack in her voice. “Now I get that. Everything was awesome, and then – BAM!”
Weeks after Emily was born, Art began having subtle symptoms. He slept through an entire weekend - totally out of character for a Green Beret trained to lug 200 pounds on his back for 20 miles. Morning runs with his team at the base left Art lagging.
“I’m not the fastest guy in the world,” Art admits, “but this was weird. Then I started having chest pains and shortness of breath.”
Within hours, he and Sarah were in the local emergency room staring at the scan of a grapefruit-sized mass in Art’s chest. A heart surgeon who’d just finished his last case of the day ordered Art prepped for the OR. The mass was pressing on organs, causing fluid buildup around his heart that had to be relieved.
While addressing the heart issue, the surgeon took a biopsy of the mass. Surprisingly, it turned out to be acute myeloid leukemia (AML), a cancer of the blood that can – rarely – form masses anywhere in the body.
Local cancer doctors impressed upon Art that this is an aggressive form of cancer. “I was told, ‘If you do not start treatment within the next five days, don’t come back here because we’re not going to take you as a patient.’” There was no time to waste.
For the next month, Art was in and out of the hospital recovering from his emergency surgery and taking up a new battle with different weapons.
“You see the nurse come in with that chemo bag and she’s gowned up like she’s in hazmat suit and you think - you’re going to pump that into me?” Art says incredulously. Still, he knew “chemo’s not poison. It’s my medicine even though it hurts. It kind of mirrored some of what I’d experienced in Ranger School. This is going to hurt, but I need to do this and come out on the other side.”
After all, there was a new life counting on him making it through.
“I remember looking at Emily in her little rocker and just being devastated, thinking I’m not going to be able to watch her grow up. That’s what really put me on my knees.”
THE ROAD TO MOFFITT
The path forward for Art was undeniable: he would need more than chemo.
When presented with an otherwise healthy then 32-year-old patient whose AML has evaded the blood and bone marrow to create a large mass, medical oncologists like Asmita Mishra, MD, of Moffitt’s Blood and Marrow Transplant and Cellular Immunotherapy Program regularly recommend stem cell transplantation – as soon as possible. A 2015 study in the journal Leukemia showed middle-aged AML patients who underwent donor transplants survived longer without relapse than those treated with chemo. “It’s just the nature of this disease,” Mishra explains, even more so for younger patients like Art. When you’re looking at the course of a lifetime that could span another 40 years, she says, the chance of relapse without transplant is almost guaranteed. And the chances for survival dwindle with each relapse.
Moffitt has plenty of experience with AML patients who need transplants. Its transplantation program is the busiest in Florida and one of the largest in the Southeast. Mishra says AML is the number one diagnosis for donor transplants at Moffitt. Since 2008, the program has transplanted more than 375 AML patients while in their first complete remission – even more when patients who’ve relapsed are counted in the transplant mix.
When he learned that stem cell transplants are not performed at any of his local hospitals, Art began researching options across the nation. He and Sarah agreed upon Moffitt Cancer Center. A major selling point was that Moffitt was just one long day’s drive from home. “But reading about their success rate of treating cancers and their experience with stem cell transplants made us confident in the choice of going to Moffitt,” says Art.
Getting him there would fall to then-Care Coalition Liaison Johnny Moses and connections forged through a partnership between Moffitt and U.S. Special Operations Command (USSOCOM) at MacDill Air Force Base in Tampa A former Special Ops medic, Moses’ role was to be “that one person to call to make things right.”
“We send these men and women to war,” says Moses, “and I think it’s important for us to think about every aspect of care, about the support that they have.”
Thankfully for Art, Moffitt had another support point person in store for him. Nancy Drourr, an executive patient coordinator in Moffitt’s Patient and Family Centered Care Program, has helped guide Art and Sarah since their very first visit. “Miss Nancy,” as Art calls her, “has been terrific throughout the entire process. She made us feel at home.”
A good thing, since Moffitt would soon become the whole family’s home away from home.
THE SEARCH FOR A MIRACLE MATCH
From the moment she became Art’s transplant physician in the summer of 2015, Mishra could tell just how motivated he and Sarah were. “They were ready to begin this journey towards transplantation,” she says. “If it could have happened yesterday, they would have done it.”
One thing stood in the way: finding a donor. There wasn’t a close match within Art’s immediate family. That meant searching donor marrow registries worldwide - a challenge for Art because of his ethnic background. Caucasians searching the registry for an appropriately matched donor stand about a 60 percent chance of success, says Mishra. The number drops substantially depending on the patient’s unique mix of ethnicities.
For Sarah, this presented an opportunity to do something concrete for Art. She set up two drives to sign up Art’s military colleagues for the National Marrow Donor Registry. The outpouring was so great that additional signup forms and test kits had to be flown in to nearby military compounds. “We got over 500 people,” Sarah says humbly. “And I figured – if we don’t find a match for him, maybe it will benefit someone else.”
Not long after, Art got the call from his Moffitt transplant team. A perfect match had been found. “It was cause for celebration,” says Art. “I think we had steaks that night.”
“I have not met this angel or spoken to her,” he says, though he’s reached out to his donor in letters through the registry. “All I know is that at the time she was 30 years old and living in the United States. If I could meet her, I’d just give her a big hug and cry like a baby. I wouldn’t have the words. Through her kindness, through her donation, I’m here today.”
Not that it was easy even once the match was found. Preparation to receive the donor cells requires intense chemo – stronger than anything Art had previously taken. “They said – if it wasn’t for your donor cells, you wouldn’t come back from it.”
“But once they gave me my new stem cells,” he says, “those puppies engrafted and started producing cells right away.”
Before and after the engraftment, Art had his share of transplant complications. Mouth sores that made eating and even swallowing difficult. Reactions that left his skin peeling. And, most seriously, a condition called graft-versus-host disease (GVHD) in which the new immune system components created by the donor cells begin attacking the patient’s healthy tissues. For Art, the GVHD became chronic, hitting his lungs hard.
“There was a period of time when Art couldn’t walk but a few steps without feeling winded,” explains Mishra. “It’s been quite a journey to get it under control.”
Managing such issues is one reason why transplant recipients have to spend their first 100 days within 30 minutes of Moffitt. Art, Sarah, their toddler Emily, teenage son Artie and Art’s mother all made the move to a two-bedroom apartment that Moffitt coordinator Drourr found for them close to hospital.
For Art, there was never a question about having his family with him.
“You’re in a very precarious state,” he explains. “I needed to see my family and be around them. For me it was a part of my recovery.”
Mishra says Art’s military background and Sarah’s unwavering support were invaluable to handling his complications. “Transplant is all about managing risk and following the rules,” notes Mishra. “Both Art and Sarah are extremely savvy, well informed and aware of the risks. When I said ‘jump,’ he and Sarah always said ‘how high?’”
She says watching Art – a patient younger than her and much of the care team – soldier through this process was a tremendous inspiration. “I couldn’t say if I or my contemporaries really have the wherewithal to withstand what he did.”
“You go from being the stout, muscular guy with gorgeous hair under that Green Beret,” Art quips, “to being this skinny, bald cancer patient.” In particular, he worried about son Artie watching that change take place.
“He may not be as physically strong as he used to be,” says Artie. “But I think that going through this has made him even stronger as a person.”
“Transplant changes you,” Sarah says in retrospect. “It’s your cure, and you’re thankful for that. But it’s also an adjustment, and it’s difficult, so you have to learn to live with that new life.”
For Art, his new life became focused on the experiences that brought him through.
A NEW, REAL-WORLD MISSION
Follow Art as he walks on the base to his new office, and you can sense a difference in his stride and demeanor. “There’s an absolute comfort level being in this setting,” he says. “To me, this is home.”
As Art recovered enough to consider a return to duty, he says, “the stars aligned and a position opened up in what’s called the Force Preservation Directorate.”
In his new role, Art works with Special Forces soldiers experiencing serious illness or injury. “We put so much time, effort and money into them and their training that we want to retain our Special Forces soldiers and be able to have a support structure for them in the most serious cases,” Art explains.
“I’m able to come in from a patient’s point of view and have that empathy. It’s supporting my brothers who are going through some tough times that I know exactly what it feels like to go through. I consider this a real-world mission with real-world consequences. It’s a fulfilling and rewarding job.”
Art says one of the best things about the job is being able to work daily with some of the people who helped him, like Johnny Moses – now retired military, but still working with the Care Coalition.
“Art going through all this experience makes him a subject matter expert,” says Moses. “He knows who to call; he knows how to cut through the fat. He is a passionate leader and he gets these soldiers to where they need to be.” Especially when they need “Magic Moffitt,” as Moses refers to it. “I actually have three other gentlemen that were sent down there and they were cured. Moffitt is awesome, I’ll tell you.”
As for his own prognosis, Art says, “I just hit my two-year mark and my scans were clear, so thank God for that. I’ve been told ‘we’re not worried about the cancer anymore.’
“Looking at my daughter now, it is different. It’s like there’s hope. There’s hope for a future.”
Editor’s note: Since this article was written, Art had an opportunity to “meet” his donor via a special video message at Moffitt’s annual Magnolia Ball. As guests of honor, Art and Sarah were surprised by the special video from the donor, who was unable to attend and meet them in person because of a prior engagement that weekend: her wedding. Our best wishes to all.