My mother, Mary Lee, in her younger years.

Today is a special day of remembrance for me. It’s the third anniversary of my mother’s leave-taking. She died of lung cancer, and, as with all losses, her absence has left a great space. She lived in a small South Carolina town and took her chemo and radiation treatments locally. She was hospitalized in a regional medical center and lived only five months past her diagnosis. During the time of her illness, I kept thinking I would like her to go to one of the premier cancer centers where she could get the best treatment available, but given her age (82) and her husband’s (89), I knew they wanted to stay close to home and that they had full confidence in their doctors (though since then, my step-father has voiced doubts about the medical regimen she was put through).

This brings me to a question that our MMA leadership ponders quite often: How to reach a reluctant populace of patients such as those living in rural areas or those of senior status who represent a generation that never questioned the doctor, spelled with a capital D. Just as others do in a country whose health care is the most advanced in the world, these folks are entitled to advanced specialized treatment. For those with limited financial means, Mercy Medical Airlift is the answer to providing access to that care. And while we help many elderly and rural patients, we would like to help more. How to make our message resonate with them—that is the challenge.

Vicki S., of Madison, Kentucky, suffers from a rare disorder called “familial exudative vitreoretinopathy,” or FEVR. It’s a genetic progressive eye disease caused by a defective gene. Mercy Medical Airlift provided flights for Vicki and her brother, also a FEVR patient, to the National Institutes of Health to participate in a clinical study.

“Alone we are rare. Together we are strong.” That is the motto for Rare Disease Day on February 28. Ten percent of Americans suffer from a rare disorder, with many living lives of unimaginable pain, financial hardship, and social isolation.

The day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD) and in Europe by Eurordis (Rare Diseases Europe). It’s designed to bring heightened awareness to the fact that rare diseases are a public health issue. Also, it is to “celebrate the special relationship between patients and rare disease researchers.”

Visit www.RareDiseases.org to learn more. Read the patient stories. Read about the work of dedicated researchers. We owe it to our fellow human beings in the pain community who have much to teach the rest of us.

She’s been through a lot, but she’s full of joy

Nan Nan runs and tumbles with her friend Bear, a big, brown stuffed animal she drags through the kitchen, hallway, and every room in the Webster house she makes ring with her laughter. I am here for dinner with my friends, Jim and Beckie of Virginia Beach, and their daughter Stephanie Webster, who has escorted Nan Nan from China. It’s rewarding to meet this special little girl who has traveled from Jiangjin to the United States for medical care. Stephanie has lived and worked in China for the past six years and is the director of the China branch of Australia Relief and Mercy Services. Many helping hands came together to on her behalf, including one of MMA’s programs, the National Patient Travel Center.

The other parties that helped Nan Nan besides the National Patient Travel Center are Drs. Jeffrey Blount and Charles Law from Alabama Children’s Hospital; the Children’s Health System in Birmingham, which provided comprehensive health care and surgery at no cost; Grace Children’s Foundation, which gives medical, surgical, educational, vocational and humanitarian aid to orphans in China; and Continental Careforce, a nonprofit organization that provides “airline transportation to people who have to travel due to critical medical or personal situations” and gave round-trip tickets to Webster and Nan Nan valued at approximately $2,000 per ticket.

“She’s an amazing little girl,” Stephanie said. “She’s been through a lot, but she’s full of joy.”

Solange Charles escaped from the building which trapped her when the earthquake struck on January 12 and managed to get to her truck, where she spent six days until her son, Joseph “Screwface” Charles, found her with a badly injured left leg and close to death. Screwface is a music producer living in Virginia Beach who went to Haiti to find his mom. She was airlifted from Haiti and hospitalized in West Palm Beach. You can watch this gripping story in the WVEC-TV news segment and scroll down to read about MMA’s role in providing a commercial flight for Mrs. Charles from Miami to Norfolk.

Thank God we can answer cries for help. And thank you, donors, for your financial gifts and unused miles that advance our vital cause.

This is what we do here—we help make burdens light. And while, like any organization, we have to tend to the business side of  things—finances and efficiencies, technologies and marketing, forecasting, staffing, and trends as sudden and diverse as newly-spotted stars—keeping faith with the mission is what matters most. In our case, the mission is to make sure no patient in need is denied access to specialized, medical care because of inability to pay for air transportation.

We offer charitable flights in small, private planes through our volunteer pilot program. We offer donated commercial airline tickets through our special lift program. We offer discounted air ambulance flights through a program called Air Compassion America. We match patient needs with appropriate travel resources through our National Patient Travel Center Helpline that is operational day and night. In fact, the numbers just came in from 2009 showing we served 21,003 clients. That’s a lot of veterans and children, cancer patients, burn victims, the elderly, and patients with rare disorders whose lives have been improved or saved because, as we often hear from those we serve, “I was able to get the best medical care in the world.” 

We keep the torch of mission burning in many ways. Staff members rotate pager duty so they can answer after-hour calls from patients. The mission statement is displayed in all our offices. Our CEO inspires us at special luncheons and events when he shares from the heart. Many of us post pictures of our patients on bulletin boards and share their stories with each other and through our electronic and print newsletters. Compassion is our core.

When a sense of a higher cause infuses the workplace—especially when the place is a nonprofit charity like Mercy Medical Airlift—the details of daily operation—from running the overhead to sharpening a pencil—become significant as elements of a purposeful whole.

Suzanne Rhodes is the director of public affairs at Mercy Medical Airlift in Virginia Beach, Virginia, and the author of Angel Flight Mid-Atlantic, Sacred Glances and several books of poetry. She assisted in the creation of an award-winning documentary, Compassion Takes Flight

The Angel Flight Mid-Atlantic program is administered by Mercy Medical Airlift.

“I have outlived my prognosis of six months by seven and a half years because I am able to travel through your service,” said Alice.

Alice, 55, uses Mercy Medical Airlift to fly from her home in Ohio to Arkansas, where she receives treatment at the Winthrop Rockefeller Cancer Center. In 2002, after a series of physical problems and the task of caring for her mother who had suffered three strokes, she was diagnosed with nonsecretory multiple myeloma. This is a rare variation of multiple myeloma, a cancer of the plasma cells in bone marrow. With nonsecretory multiple myeloma, the body fails to secrete a protein, and the bone marrow looks normal, allowing the myeloma to travel through the bones undetected.

Shortly before her mother’s death in 2001, Alice began to see signs of her illness. She started having shoulder pain and sought medical help. The doctor told her that all of her tests showed up fine and prescribed Vicodin. The pain grew worse.

“Eventually the pain was so bad I took eight at one time and the pain was never touched by it.”

As the pain worsened, Alice asked to see an orthopedic surgeon. For almost a year she received a cortisone shot every couple of weeks, but the pain remained.

After that, her right hand swelled up, and she went to her clinic doctor thinking she had arthritis. Her doctor laughed at the idea of arthritis and took an x-ray of her hand. By the time she arrived home, there was a message from her doctor to call immediately. She was told she had a fracture in her wrist and hand, and was instructed to see the orthopedic surgeon. Full body x-rays were taken and the doctor showed Alice the film.

“The doctor came in and shot up one X-Ray and said, you have a tumor here, here and here.”

A tumor had eaten through her wrist. Nonsecretory multiple myeloma was diagnosed.

She underwent seven months of chemotherapy and traveled to Cleveland Clinic in Ohio for stem cell transplants. This caused her to be away from home where she cared for her brother, who has Down’s Syndrome, her foster son who was severely brain damaged, and her biological son who was just starting high school. She kept in touch with her family and talked to her son three times a day.

“One of those calls he pleaded with me, saying ‘Momma, you can’t die. Please don’t die.’”

Once Alice was eligible for Medicare, she headed to the University of Arkansas for Medical Sciences (UAMS), the top research facility for myeloma internationally. She travels to UAMS every year, where they have stocked up on her stem cells in case of a relapse.

At UAMS she found out about Mercy Medical Airlift.

“The people who work for MMA are not just providing transportation,” she said. “They are the steady voice that gives you courage when you are alone and away from home.”

Alice, awaiting her son’s graduation from college this December, is still making progress with her illness, but the road is tough. She receives a small disability check and faces a foreclosure on her home. Thanks to MMA she is able to continue traveling to Arkansas for her treatment.

“They work miracles in their own way. They save lives.”

Earlier, I had spoken with Jill Adam, John’s niece, who has been actively involved in her uncle’s medical arrangements.  She explained that Hampton Roads is home to him and that he had decided to retire in Virginia Beach after his last military assignment in Norfolk.   Sherry also lives in Virginia Beach.  She had flown up to Albany so as to escort her dad home.

Jill said that this past September, John and his wife, Tessie, were in New York for a reunion of his Navy buddies when he had a stroke right in the hotel lobby.  He was taken to St. Peter’s and stabilized, then later was transferred to a rehab unit. “He was scheduled to fly home on October 24,” Jill said, “but on the Friday before, he had another stroke.”  She said Air Compassion America made it possible for him “to come home.  He couldn’t have otherwise.”  That is because ACAM saved the family thousands of dollars. “I called four other air ambulance companies,” Jill explained. “The prices were from $13,000 to “$26,000. We’re paying $5,630, and that’s for bed-to-bed. Robin couldn’t have provided any higher standard of care.”

At last the plane landed, and we watched as medical workers carefully lifted the stretcher and patient out of the cabin and into the waiting ambulance. Other than John needing oxygen, the flight was uneventful. I had a good feeling inside as I watched his daughter kiss him on the cheek and welcome him home.  That’s what Air Compassion America is all about.

The Air Compassion America program is administered by Mercy Medical Airlift.

The fourth annual Redemptive Film Festival screened the winning films on Friday night, October 16, including Compassion Takes Flight. Saturday’s Grand Awards ceremony was a semi-formal affair, and I had the honor of accepting the Redemptive Storyteller Award on stage and giving a brief acceptance speech.

Kudos to the filmmakers from 30 countries including the U.S. who were rewarded for their works of excellence and inspiration, and to the festival’s founder and director, Dr. Chris Cunningham, for promoting family-friendly films and for giving all of the festival proceeds to the International Justice Mission (www.IJM.org) to combat modern-day slavery.

Compassion Takes Flight will be screened on Friday, October 16 at Regent University in Virginia Beach. The public is invited at no charge. The award will be presented the next day at the Grand Awards Ceremony, also at Regent.

For more information, visit http://www.redemptivefilms.com/, or call/email me at 757-271-2299,  mailto:Suzanne@MercyMedicalAirlift.org.

We hope the film will serve as an important educational tool as well as an inspiration to those who watch it as it answers the questions, “Why patient travel?” and “How do patients travel?”