Airman battling rare cancer found in less than 25 people worldwide

Story by Staff Sgt. Chad Menegay, Ohio National Guard Public Affairs

DAYTON, Ohio. (05/16/19)

She has endured level-10 pain essentially head to toe. She has endured partial paralysis, and she has endured her spinal cord stripped down to bare wire. She can now eat. She can now talk, and she can now smile with her family and friends, laughing with an infectious joy again because the treatments are working — at least for now. The extremely rare cancer, with only 23 cases ever recorded worldwide, has receded to an extent. Her doctors are amazed at her resilience and enthused at her progress.

Her husband helps her lift her knees in her hospital bed, and she waves them proudly side to side like the American flag in the air. She couldn’t do this just five weeks ago, when she was choking on her saliva and in a fog of drugs and pain. She suffered complete paralysis of her legs with the loss of all feeling from her navel to her toes and with swollen nerve endings throughout her spine and brain. The disease also attacked multiple other motor and sensory functions resulting in blurred vision, hearing loss and impaired speech. Her condition further degraded with the inability to swallow, necessitating a feeding port directly into her stomach. Chemotherapy, along with another potentially life-saving medication, have helped her partially recover. She talks now about a new outlook on life, a higher level of appreciation for family and the little things.

“I have cancer, but cancer doesn’t have me,” said Master Sgt. Charlotte Ortiz, the assistant recruiting and retention superintendent for Headquarters, Ohio Air National Guard in Columbus, Ohio.

There is room for optimism here at Miami Valley Hospital in Dayton for the lifelong Airman with 21 years of service, especially now that her insurance company has approved coverage of her doctor-recommended medication that seems to be helping in her battle against this deadly disease.

Ortiz sees herself overcoming the cancer within nine months to a year and being able to put her uniform on again one day.

“There is nothing stronger than the heart of a volunteer.”

— Gen. James H. Doolittle

Ortiz’s heart has been unaffected by the rare cancer.

Extramedullary Granulocytic Sarcoma with Central Nervous System Involvement (EGS/CNSI) aggressively attacks and degrades the central nervous system, from the brain throughout the spine, causing inexplicable pain along with a loss of motor and sensory abilities.

She attributes her resiliency through this suffering to her experiences in the military.

“When I first had an inkling of my diagnosis, I remember saying to my mom, ‘I don’t do good with needles; I don’t do good with blood,’” Ortiz said. “We stood there in the kitchen, and I said ‘I’m scared; this is scary,’” she said, while breaking down emotionally and crying for a moment.

She continued, “But you know somehow, just like when you’re put in any situation in the military, a hard situation, a scary situation, when you’re up against your commander or you’re forced to do something, you just do it,” she said. “You just do it,” she repeated.

“That’s a good plug for Nike,” she laughed, showing the range of emotions she’s been through lately.

“You just don’t know another way; you just have to do it,” she said. “If you’re in chemical gear all day, and it’s 90 degrees outside, and you’re going, ‘Oh my God, this is horrible.’ Or if you’re on a crappy drill weekend or you’re on a deployment, you just do it.”

Ortiz is thankful for the resilience training the U.S. military has provided over the years.

“They teach you resiliency in all life circumstances, from dealing with family issues to depression; it’s so important for your spiritual health, your physical health and your family,” she said.

Charlotte’s husband, John Ortiz, a retired chief master sergeant, said Charlotte hasn’t changed her personality one bit since being diagnosed and through all the suffering.

“Her smile is infectious,” he said. “She’s a very caring, positive person. She doesn’t know a stranger. The recruiting gig that she got into so long ago was a perfect job for her because she can hold a conversation with anyone.”

“A smile is the universal welcome.”

— Max Eastman

As a recruiter, Charlotte has welcomed over 500 Airmen into the National Guard since 2003 by swearing them in with a smile.

“It’s been such an awesome opportunity because I feel like, on a day-to-day basis, I personally have affected the lives of so many people — young and old — who have joined the Air National Guard,” Charlotte said. “I’ve learned to recruit and learned how to talk to doctors, lawyers and health professionals about what the Air National Guard can do for them. A lot of people have come to me in my career and said ‘thank you,’ and that means a lot when you can feel like you’ve done something that’s affecting somebody else’s life in a positive way.”

Charlotte has won a great number of military awards including the 2016 Top Officer Accessions Recruiter for the Air National Guard nationwide, three meritorious service medals, and countless other recruiting awards.

Over the years, she has transitioned from direct recruiting to supporting events, meeting with students, training and teaching others to bring in the next generation of Airmen.

“My favorite part of the job is going to a good event with a lot of people and a lot of interaction and really getting out in the crowd and talking with people, because I don’t get to do that a lot anymore,” she said.

Charlotte said that she doesn’t fit the stereotype of a military recruiter.

“I’m very upfront and honest and positive,” she said. “I tell them about everything that the Air National Guard can provide for them. We have a family friend who we went to dinner with and sat down with their son about the Air National Guard, and he’s now in the U.S. Marine Corps,” she said and laughed.

Charlotte has even recruited whole families into the Air National Guard, namely service members and their children.

Much of her own family has served. Her dad, Mark Apland, who was stationed at Wright-Patterson Air Force Base in Dayton, was active duty Air Force for 26 years.

“I always understood that ‘you’re part of an Air Force family,’ and I knew it was a good life, and I knew it was something I wanted to do,” she said. “Joining the Air National Guard was the best decision I could have ever made. I met my husband that way, and just everything has been great.”

Charlotte’s stepdaughter, Delani, also serves in the Ohio Air National Guard as a medical technician. Combined, the family has served and sacrificed a total of 79 years of military service to their state and nation.

“True patriotism hates injustice in its own land more than anywhere else”

— Clarence Darrow

Charlotte’s case is unique because the disease is so rare.

Her situation, however, with her insurance company originally choosing not to cover her doctor-recommended medication, is also in some ways not unique. Hundreds of thousands of cancer patients are delaying care, cutting their pills in half or skipping drug treatment entirely as a result of non-coverage, a Kaiser Health News examination shows.

A couple months back, Charlotte’s insurance company sent her a letter stating that coverage for her doctor-recommended drug would not be approved. The Ortiz family appealed the company’s refusal to pay for her medication and asked repeatedly for a basis for the denial. They also contacted members of Congress to raise awareness of their dire situation.

The drug Charlotte has been taking is the specific medication prescribed by neurological and oncology specialists around the country, including her own primary oncologist, Dr. Mark Romer, for this specific type of cancer with no other options.

“Charlotte’s cancer is so rare, that the drug has been proven to stop the mutation of melanoma, which is widespread everywhere,” John said. “If she had melanoma, (her insurance company) would have approved it (upfront). Being that there’s only 23 people in the world who have had this type of cancer, the FDA (Food and Drug Administration) has not approved it for that use, so (her insurance company was refusing) to approve it.”

John said that specialists around the country are saying that the $11,250-per-month medication, a nonexperimental drug, is “the only thing that we’ve got to save her life and to stop the mutation.”

Charlotte said that it made her sad that her condition may not have been treated fully due to a broken corporate system of bureaucracy. Her doctors agreed and advocated for her as well.

“I think staying on (this drug) is important for Charlotte,” said Dr. Mark A. Marinella, an oncologist working with Charlotte at Miami Valley Hospital. “This drug is being used in addition to chemotherapy to get an additive effect, and it’s working. Some of the insurance companies, even if you provide data or expert opinion, they still push back.”

Marinella said that Charlotte has been kind and positive and generally remarkable in her attitude toward her condition. Charlotte has responded positively to her first treatment of chemotherapy, resulting in a reduction of cancerous masses throughout her nervous system. To survive, she must endure continuous doses of chemotherapy throughout the remainder of the year, which come with their own risks to her health and her battle with cancer.

However, the chemotherapy merely destroys the cancer cells but does not prevent further cell mutation. Without her doctor-recommended prescription, the cancerous cells may continue to develop, eventually overcoming the chemotherapy and inevitably depleting Charlotte’s physical capability to thrive and survive.

The Ortiz family is thankful that so many people — from politicians to military officials to retired military leaders to Charlotte’s doctors — advocated for them, pressuring the insurance company to reverse its decision.

Charlotte has been visited many times by Ohio National Guard members whose lives she has touched over the years. She has support from all ranks in the organization.

“Rest assured that we will bring every available resource to bear to help the Ortiz family through this time,” said Maj. Gen. John C. Harris Jr., Ohio adjutant general. “I’m very much looking forward to seeing Charlotte fulfill her mission to walk by December — I plan to be there when she does.”

Now Charlotte can continue to endure the cancer and the chemotherapy without worrying about whether her medication will be covered by insurance. She can now more fully focus on meeting her goals of both walking and being cancer free within a year.