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WAR AND SILENT WAR By Ned Soseman - an update of our Solider Story

Imagine you’re 41 years old, driving along I-44 when your cell phone rings. The caller is your family doctor who says you have been diagnosed with cancer and have only one to three months to live. Shock, despair, anger, frustration, hopelessness; you’re instantly overwhelmed with the worst.

What do you do when the next call is from hospice? If you are Staff Sergeant Daniel Barber of Missouri National Guard D Company 1-106th AVN, you hang up on hospice and give all you’ve got to begin strategizing to win a silent war against Stage 4 liver cancer.

All the motivation and focus Staff Sergeant Barber needed was his doctor telling him “You’re going to die, don’t get your hopes up,” a loving family, and a son too young to understand. His mission was “to live long enough to explain what was happening to my son.” His plan was to “not take no for an answer.” He and his family began praying the first of countless prayers.

Military veteran Staff Sergeant Barber has been to war before. He was a soldier in Operation Desert Storm in 1990 and deployed twice more, from 2003 to 2005 and from 2008 to 2009, both for Operation Iraqi Freedom Delta Company 1-106th.

His first deployment was Al Quasumma, Saudi Arabia. When his C-141 transport from the states landed at King Fahd Airport, the airport was under scud missile attack. That’s when he appreciated why he and his fellow soldiers wore combat gear and were fully armed on the flight. He describes the scud missile attack as “the wild-wild west. There were lots of air raid sirens blaring.”

Staff Sergeant Barber is a positive, affable man better known to his friends as Dan. Today, he looks acts and feels perfectly healthy. He is the husband of Deanna and father of Luke, who will soon turn 11 years old. Dan was born in southeastern Missouri and graduated from high school in Perryville MO, where he was an All-State Linebacker. He headed on to Linn State Technical College in Linn MO and graduated in the aviation maintenance program.

Technical college wasn’t inexpensive and Dan was burdened with student loans to prove it. He learned of a student loan repayment bonus program offered by the Missouri National Guard and enlisted in 1989. His student loans were repaid but that’s not the only reason joining the Guard was one of the best decisions Dan ever made. He is living proof that “The Army leaves no-one behind.”

Far the battlefield but suddenly confronted by the unthinkable, Dan quickly became his own best advocate, receiving support from the Army, former MO Congresswoman Jo Ann Emerson and MO Senator Roy Blunt. Dan’s silent war with cancer uncovered a little known treatment that has proven successful for him, and it uses red tape to fund the treatment he needs. Dan is winning personal battles for himself and his family and bringing hope to other Americans battling carcinoid cancer.

Dan had been experiencing digestive tract symptoms for a half-dozen years. When his symptoms became difficult to ignore, Dan sought medical advice at Ft. Leonard Wood. Upper and lower GI tests performed at Lake Regional Hospital in Osage Beach led his Ft. Leonard Wood physician to diagnose him with esophagitis gastritis. “The base doctor prescribed some medication to cut down on my stomach acid,” and cleared Dan to deploy to Iraq.

Shortly after clearance from a flight surgeon, Dan deployed with his unit back to Iraq. During some strenuous work-related activity, Dan felt so faint and dizzy he dropped to his knees. He visited a medic who diagnosed his faintness as symptoms of an upper respiratory ailment. The medic prescribed three days of antibiotics and Dan took care not to overexert himself.

Back in the States in late summer 2009, Dan began to feel rib pain and his family was becoming more concerned about his health. He first visited his physician in Richland MO, who sent him to Lake Regional Hospital in Osage Beach for an ultrasound of his gall bladder. The results were inconclusive, but it did raise questions about his liver. His physician ordered a follow-up CT scan at Lake Regional. It revealed carcinoid cancer, which prompted the phone call that Dan received on I-44.

Dan visited a doctor in St. Louis who felt the best treatment was $3000 monthly shots and chemotherapy. First, the doctor had to remove his gall bladder because the shots cause gall stones. During that surgery, the doctor counted more than 50 tumors on Dan’s liver, sized from sand grains to lemons. He gave Dan three to six months to live with the carcinoid cancer before it kills him. Dan and his wife began planning to sell everything they owned to pay for treatment.

The results of his treatment were as expensive as they were disappointing. Time, money and hope were rapidly diminishing as Dan searched the Internet for answers and ideas. New information he found at the Heartland Carcinoids website (, gave him and his family some much-needed hope.

When Missouri National Staff Sergeant Daniel Barber isn’t deployed with his Guard unit or with his family, he is a Quality Assurance Specialist at the Christopher S. "Kit" Bond Army Aviation Support Facility (AASF) #2, Fort Leonard Wood, working on UH-60 Blackhawk helicopters. While at it, he trains other helicopter mechanics and he’s been doing it for 19 years. His facility is staffed with 30-35 co-workers, and Dan clearly loves what he does.

Dealing with his serious medical condition quickly put Dan in the precarious position of running out of sick time at his job. In October 2009, through a MO National Guard program that allows co-workers to donate vacation time to each other, Dan’s co-workers rallied and donated 196 hours of vacation time to him. Thanks to the compassion of his work family, Dan and his wife and son never missed a paycheck. It was an act of unselfish kindness that Deanna and Dan will cherish forever.

Dan’s St. Louis physician appeared more interested in continuing the shots and chemo than hearing what Dan had been learning on the Internet. Dan craved a specialized second opinion and everything he read recommended more aggressive approaches. Standing out among carcinoid cancer experts on the Heartland Carcinoids website was Dr. Jean F. Botha, Director of Hepatobiliary Surgery and Director of the Living Donor Liver Transplant Program at the University of Nebraska Medical Center in Omaha (UNMC). Dr. Botha is a professor at UNMC, trained in South Africa and Germany. They began corresponding.

About that time, Staff Sergeant Daniel Barber was accepted into Ft. Leonard Wood’s Warrior Transition Unit (WTU). The WTU provided Dan the opportunity to continue his job working on Army helicopters, when he wasn’t attending medical appointments to receive the specialized care he needed to survive. With his medical care time restriction lifted, Dan’s first step was to visit Professor Botha in Omaha.

Dan was hoping for a two-stage liver resection. But after examining Dan and his medical records, Dr. Botha felt he was not a suitable resection candidate. He recommended three options. One was a liver transplant. The second was a multivisceral (multiple) organ transplant. Both were expensive and risky. The third option was most preferable. It was PRRT (Peptide Receptor Radionuclide Therapy) followed by surgery and a small bowel resection. There was however, a catch. PRRT was not approved and practically unknown in the US.

The concept of PRRT radioisotope therapy dates to the early 1900s in what was once East Germany. Technology allowed it to become practical for tests and trials in Europe in the mid-1990s. Only recently have clinical trials become available in the US.

PRRT is a form of targeted therapy, designed to impact certain tumors that can absorb certain types of chemicals bound to radioactive materials. Receptors in the tumors attract the chemical with the radioactive material it is absorbed into the tumor by the receptor. The localized radiation then begins killing the tumor cells. PRRT was the obvious best choice and the leading PRRT testing and trial facility is in the city of Bad Berka, former East Germany. The question was how to pay for it.

Like a young Perry Mason in the Internet age, Dan poured through the military’s TRICARE medical insurance policy documents. He read the words until they made sense, sifted them for clues, then he copied, pasted, printed and referenced what he found. He discovered several relatively obscure but appropriate policies and programs that could cover his medical expenses. Among them were a rare disease clause, and another clause which stated if he could demonstrate an unproven medicine treatment was safe and effective, TRICARE would pay for it.

Dan was so focused building his files of Army programs, clauses and paragraphs that might help provide for his unusual medical needs, when opportunity came knocking he nearly ignored it. Dan’s WTU at Ft. Leonard Wood was about to be visited by Brig. Gen. Gary Cheek, commander of Warrior Transition Command, and Sgt. Maj. Ly Lac, the Warrior Transition Command sergeant major. They were coming to the post WTU for a townhall-style meeting.

Dan was immersed in his TRICARE research and didn’t want to take time for the meeting. His fellow soldiers urged him and his squad leader made him go. Dan listened but said nothing. As the meeting wound down everyone in the room pointed at Dan and said “General, you need to talk with Sgt. Barber.” The General and the Sgt. Major focused their attention on Dan.

Dan just happened to have his file folders with him, which included recent printouts of the rare disease and unproven medicine clauses of the TRICARE plan. He handed his files to the General and diplomatically explained his frustration navigating the Army health system. Some had even suggested Dan retire and then receive treatment.

"We went over several avenues of the PRRT treatment. We discussed how this treatment was only done three places in the world," Dan said. "Brig. Gen. Cheek was very supportive and impressed that I had done my homework. As long as there was a policy in place, he said he could support these treatments." Dan’s wife Deanna calls the meeting “Fate,” and her husband agrees. Because Dan was a Title X Active Duty Military, TRICARE paid all of Dan’s medical expenses.

Within a week, Brig. Gen. Cheek scheduled a meeting with Dan at Walter Reed Medical Center to explore his treatment options. At Walter Reed, Dan met with an oncologist who approved PRRT as a treatment option. Brig. Gen Cheek approved the German-based PRRT treatment. Dan’s medical records were sent to Professor Dr. Richard Baum, a PRRT expert at Zentralklinik in Bad Berka, Germany.

Dr. Baum responded that Dan appeared to be a good PRRT candidate. Dan was excited to be working with doctors with wider world views. In 2010, Dan checked into the clinic in Bad Berka. The WTU provided his travel, lodging and support. It also quickly resolved a surprising prepayment requirement at check-in.

The clinic performed a series of tests, including some not available in the US. The tests showed Dan’s tumors were slow growing and had high receptors, which made him an ideal candidate for PRRT. That’s when Dr. Baum gave Dan the news: “Dan,” the professor said, “You’re going to live a long life.” He went on to explain “'Out of my 2,000 patients, out of my 10 years of doing this, with the receptors your tumors have, your condition and where you're at, this is what I see.”

PRRT is an intravenous procedure that begins with an hour-long kidney-coating drip, followed by 15-20 minutes of a special machine pumping the Peptide Receptor Radionuclide solution into the body, all during which time the patient must drink three liters of water. The water helps the body expel the radioactive material, but the procedure requires several days of rest when completed. Dan said there was no pain when he received the treatment, but it did make him “nauseated, a little sick, disoriented and tired with no appetite,” which translated to a 12 lbs. weight loss.

It didn’t take much time in Bad Berka for Dan to recognize a crucial need to learn German. “Few people spoke English. Communication was a problem,” Dan said. Back home in the US, he found an Army on-line language training course, based on Rosetta Stone, where he learned German.

German-speaking Dan has since made three more trips to Bad Berka for PRRT sessions. At his second session, Dr. Baum noted a 30-50% reduction. His third treatment included dual PRRT for large and small tumors and indicated additional 30-50% shrinkage. During the time, Dr. Jean F. Botha in Omaha was receiving copies of all Dan’s scans from Germany. Dan returns to Germany every April for “restaging.” His condition remains “Stabilized and partial remission noted.”

It was also in Bad Berka where Dan met a team associated with Dr. Eric H Liu, M.D. from Vanderbilt Neuroendocrine Center, visiting Germany for PRRT training. Today, Dr. Liu and his team are running PRRT clinical trials at Vanderbilt and monitoring Dan’s progress. Dr. Liu, Dan and are working together to bring PRRT to the US.

Later, Dr. Botha performed surgery on Dan in Omaha to remove all the “dead and brittle” carcinoid tissue from his mid-gut. In three hours, Dan walked and felt significant relief. Essentially, Dan was found to be normal and his tumors are “stable.” His next appointment in Germany is in April 2014. Dan continues to meet with his base Chaplin every Monday for weekly prayer.