CHAPEL HILL, N.C. – Claudia Laskow has never been a shrinking violet.  A breast cancer diagnosis and its treatment didn’t change that.

“No one is a stranger to Claudia,” said Jan, 58, her husband of nearly 33 years, who was hooked when they met in eighth grade.  “If they don’t know her, they want to know her.”

“I’m just a social worker at heart who knows a sense of humor helps any situation,” said Claudia, 58, who holds a masters degree in social work and is a real estate agent in “the Village of Avon, on the Island of Hatteras, in the County of Dare.”

The Doylestown, Pa., natives moved to the Outer Banks in 1989 after falling in love with the surf and sand they enjoyed over many camping and fishing vacations.  “We call ourselves long-time transients, but we’re here to stay,” said Jan, who runs a fire safety business and is assistant chief of the Avon Volunteer Fire Department.  

Jan found the lump in Claudia’s left breast last July 4. Lumpectomy results revealed Stage II-B breast cancer and her family doctor — and family friend — Bentley Crabtree, MD, referred Claudia to UNC Hospitals.  

“I know it’s where I’m supposed to be,” Claudia said.  “Even before the diagnosis was confirmed, Jan’s brother who is on the board of the University of Pittsburgh Medical Center told us if I did have breast cancer I had to get to Lisa Carey at UNC Hospitals.  Before we could ask for her by name, the referral was made, and she’s my medical oncologist.  I’ve always believed things happen for a reason.”

Day One at UNC Hospitals was long, but good, Claudia said.  It involved a full-day of meetings with key members of the multidisciplinary team that would be taking care of her through surgery, two separate chemotherapy regimens, radiation and the follow-up endocrine therapy.  It’s the multidisciplinary patient-centered care for which UNC Health Care is known.

“We know our approach asks a lot of patients, and it can be overwhelming,” said Dr. Carey, the Richardson and Marilyn Jacobs Preyer Distinguished Professor for Breast Cancer Research, Division Chief of Hematology and Oncology, and Physician-in-Chief, of the North Carolina Cancer Hospital. “Depending on the diagnosis, there can be up to six groups of physicians involved.

“The good news is we talk to patients about the value of the multidisciplinary decision making, how lots of decisions have to be made at the beginning about what is going to happen and in what order,” Dr. Carey said. “We have patient navigators to help with scheduling, questions and interpretations, and every patient gets a written plan.

“It’s always about what’s the optimal way of getting our patients through their treatment and giving them what they need, including the needs outside of the treatment. Our care is tailored to meet the needs of each individual patient.”

And that’s what Claudia — and Jan — felt and appreciated throughout the journey.

“We can’t say enough good things about everyone we’ve interacted with while in Chapel Hill,” Jan said.  “From the parking attendants and receptionists to Claudia’s doctors, they all really care about patients.  They’ve got a good thing going.”

Part of that good thing going was referring Claudia to SECU Family House, a 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

Claudia stayed there Sunday nights through early Friday mornings while she had six weeks of radiation that wrapped up on April 8.

“I had to drive home for weekends to see my sweetie, be near the water, sleep in my own bed and sit on my own toilet,” Claudia said.  “As wonderful as Family House is, there’s no place like home.”

But Family House was the ideal location for the former social worker to thrive.

“She could not have gotten the socialization she needed by herself in a hotel room,” said Jan. “She was able to help other patients—often just by listening and making them laugh — and probably gave way more than she got.  But no one was keeping score.”

A born outdoorswoman, Claudia took it upon herself to maintain the herb garden at Family House.  She brought her own clippers from home, bundled clippings for fellow residents and volunteers to take home to start/add to their own gardens and made lists of what additional herbs would round out the garden’s bounty.  

“It was pure therapy,” Claudia said.  “If I can’t put my toes in the water, let me have my hands in the dirt.  Besides, I was finished with my radiation every day before most people were up and moving.  How else was I going to spend my day?  I could only be on my computer for so long.”

By her own admission, the chemotherapy kicked her butt.

“I let the nausea and other side effects get the upper hand,” she said. “They have anti-nausea medicine for a reason.  If they tell you to take it, you should.”

“We encourage patients to be honest and tell us when they feel bad,” Dr. Carey said.  “It’s our job to make them feel better, but it’s a collaborative approach. Being stoic is not realistic or appropriate.”  

Despite some rough days, humor prevailed.  

After losing her hair to chemotherapy — and Jan shaved his head in solidarity — Claudia sported seasonally appropriate hats and caps.  She fashioned “costumes” for the chemotherapy infusion poles, the most memorable including a turkey hat for Thanksgiving.  

Then there was the pink tutu and pink boxing gloves she donned her last day of chemotherapy, with the tutu reprising its role when Claudia rang the gong marking the completion of radiation.

“I don’t normally ‘do pink’ but with breast cancer, I had to make an exception,” Claudia said, pondering the possibility of a celebratory bonfire on the beach once she finishes all treatment and gets the word that her otherwise healthy body is cancer-free.  Of course, the fire would be fueled by all the pink she’s ever worn.

“Claudia has done an amazing job, absolutely doing her part every step of the way,” Dr. Carey said.  “As far as we can tell, her treatment has done what it’s supposed to do.  Now we wait and pray, and hope it doesn’t come back.”

For now, Claudia and Jan are relishing getting back to their routine, just in time for the high season to crank up at the beach.  They will celebrate their 59th birthdays AND their 33rd wedding anniversary on May 10.  Two fish blissfully happy in the same net.

“I constantly remind her she’s 12 hours older and always will be,” Jan said.

“Yeah, I robbed the cradle, but I’m not complaining,” she said.

Wednesday, March 20, 2013

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – Cindy Sills refuses to shed a tear for herself or the rare cancer she’s fighting.  

“I’ve never shed a tear for this, and I won’t shed a tear,” said Cindy, 56, of Havelock, N.C. in Craven County.  “This is a battle I have to win.  God put me here for a reason:  to raise awareness about sarcoma.”

The strong-willed, ever-positive mother of three and grandmother of five — two of whom were born since January — had already courted death once before with a ruptured esophagus nine years ago.

“If I wasn’t a strong person, I’d already be dead,” said this sprite of a woman who always wears something purple. “Remember, your attitude is 99 percent of everything.”

On July 23, her 35th wedding anniversary, Cindy was diagnosed with alveolar rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to bones.  Of unknown cause, it can occur many places in the body, most commonly in the head and neck, the urogenital tract, and the arms and legs.  It is the most common soft tissue tumor in children, but it is extremely rare in adults.   

“On a day that was our day, cancer invaded,” said Don, 55, who has known Cindy since they were both 12 years old.  ‘We knew it was bad, but not how bad.”

“Hers is a very unusual and complicated situation,” said Joel E. Tepper, MD, Hector MacLean Distinguished Professor of Cancer Research in the Department of Radiation Oncology at the UNC School of Medicine, a member of UNC Lineberger Comprehensive Cancer Center and lead radiologist on Cindy’s health care team.

“This cancer is not common in adults, and the alveolar subtype is extremely rare,” Dr. Tepper said.  “Also, Cindy presented with metastatic disease from an unusual tumor in her lower left leg.  Because of its spread, the radiation field goes from her toes to her pelvis.  That’s a huge expanse that has produced some technical challenges, but not insurmountable ones.”

Cindy’s treatment follows a pediatric protocol because there is no adult treatment protocol, Dr. Tepper said.  “In children, alveolar rhabdomyosarcoma is well known and has been formally studied.  Cindy is far from a textbook case, but she nicely illustrates how being a good physician is about understanding the disease process and modifying the treatment for individual patient needs.”

In coordination with a medical oncology team led by Juneko Grilley-Olson, MD, Cindy received chemotherapy and five weeks of radiation at the NC Cancer Hospital.  Additional chemotherapy was coordinated with Cindy’s community hospital in New Bern, an outreach that’s appreciated and respected by patient and physicians alike.

“It’s been the best of care, here and there,” said Cindy. “The worst part is that my butt hurts because there’s no padding. I’ve lost over 50 pounds since the diagnosis.  The silver lining is I get warm sheets and blankets with my treatment.”

And it’s clear that kind of attitude is helping Cindy, Don and her health care team, said Dr. Tepper.

“Attitude is important,” Dr. Tepper said. “If you come in with a negative attitude, you lose the incentive to do the things you need to do to make it through treatment. I don’t know if it cures the cancer any better, but a positive attitude gets you through treatment easier.  Cindy’s doing great, and she is easy to work with because of her attitude.”

While in Chapel Hill, Cindy and Don stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

“Family House has been a saving grace for us,” said Cindy.  “It’s a comfort and healing for both of us.  We’re able to talk and pray with others who are going through similar situations.  It’s like we have a new family. And I like the idea of volunteers fixing dinner.”  

As for the sarcoma awareness raising it’s gone hand-in-hand with Cindy and Don’s daily routines since July 23.  

Don, a retired US Marine Corps master sergeant (MSgt.) who works a civilian logistics job at the Marine Corps Air Station at Cherry Point, immediately set to work searching online for any information he and Cindy could read about sarcoma in preparation for her treatment.

He also consulted the Patient and Family Resource Center at the NC Cancer Hospital where sarcoma information was still scarce, but where Tina Shaban, center director, followed up with other helpful advice.

“People are not just a disease,” Shaban said.  “Our job is to work with patients and their families as individuals with unique needs and talk through what it is they need most.  It’s about helping to identify gaps in what’s missing whether it’s information, support or care so they have a good understanding about what they are facing. While cancer is never easy, knowing what to expect helps.”

“We didn’t find a lot of information about sarcoma and what we did find wasn’t good news,” said Don. “We knew immediately we had to use Cindy’s fight to raise awareness. It desperately needs to be out there in the public eye which will help funding for research, treatment and ultimately a cure.”

Don set up a Facebook site called Cindy's Rainbow for tracking their journey. It also includes poems he’s written for and about Cindy, which she said, “I could hear a 1,000 times.”   The site now has 300 members and is growing.  

Through the Sarcoma Foundation of America website, Cindy and Don connected with Landon Cooper, an ultra runner who established Miles 2 Give, a 3,000-mile race across the U.S. for sarcoma cancer research awareness.    

The race began Feb. 14 in San Francisco and will conclude July 4 in Washington, D.C.  Runners cover 21 miles a day, and each day is dedicated to someone on the sarcoma journey – a patient, family member, friend or a loved one lost to the disease. Cindy’s day is June 3.

But for Don, every day is Cindy’s day.  

“She is an amazing woman, and I can’t not be by her side,” said Don, about his best friend for life. “I’ve made arrangements at work so I can be with her in Chapel Hill.  I’d trade places with her if I could.

“With the sequestration fall-out, I’m facing a furlough.  But we’ll do OK. All that pales in the face of Cindy’s disease.  We just want to survive sarcoma now.”

Wednesday, Feb. 20, 2013

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – Command Sgt. Major Nelson Corbin has always lived life leaning forward in the foxhole.  He fights cancer the same way.

“Cancer is an enemy that I don’t know anything about,” said Corbin, 57, of Parkton, N.C., in Robeson County. “I don’t know its tactics or its capabilities. It scares the hell out of me, and I don’t scare easily. So I’m learning about it and assaulting it with everything I have.  I don’t win by sitting back.  I’ve always been a leaning-forward-in-the-foxhole-kind-of-a-guy.  That isn’t changing.”

Corbin, a career Special Forces officer with the U.S. Army at Fort Bragg, was on assignment in Central America when he was diagnosed with cancer in his right tonsil with lymph node involvement in his neck in January 2012. Between 10,000 and 20,000 cases of this rare cancer are diagnosed each year with some clinicians calling it an epidemic. Many of these cancers, including Corbin’s, test positive for the human papillomavirus (HPV).

Efforts to confirm the diagnosis and be treated proved elusive until he arrived at UNC Hospitals in early November.

“Military and civilian hospitals between my post and Fort Bragg didn’t have all the elements I needed — experts trained in the treatment of this type of cancer, the drugs or the radiation — all in one place,” Corbin said.  “At UNC Hospitals, the whole package is here.  They are the real deal.

“I work in a teamwork world, where it’s all about getting the job done,” Corbin said.  “Many times that involves having one shot to get it done right.  Treating my cancer is one shot. My team at UNC is cohesive and dynamic and their mentality about healing is uncommon.  And always I am treated like another professional in the room.”

Corbin began the first of 35 radiation treatments and eight chemotherapy treatments on Nov. 26. He finished up on Jan. 25, a little later than hoped or expected due to treatment side effects.

“The treatment of head and neck cancers can cause a lot of acute side effects that are not pleasant,” said Bhishamjit S. Chera, MD, assistant professor in the Department of Radiation Oncology and lead radiologist on Corbin’s team.  “Fortunately, here at UNC we have the expertise and the people to take care of them. At a minimum, eight people followed Nelson every week so that we stayed on top of the side effects before something became a problem.”

In addition to experts in chemotherapy, radiation and surgery, team members include a nutritionist, a swallowing therapist, a speech therapist and experts in supportive care who address the anxiety that too often gets in the way of treatment, especially among patients from the military, Dr. Chera said.

“Giving radiation for head and neck cancer requires that the patient have a custom-fitted mask so that the patient can’t move and disrupt the precise path of the radiation,” Dr. Chera said.  “It’s well documented that because of their training and experiences patients with Special Forces backgrounds are especially prone to claustrophobia and anxiety due to the mask. Nelson was no exception, and he’s conquered that hurdle well.”

Having a feeding tube inserted on Christmas Eve wasn’t Nelson’s idea of a nice gift, “but it’s the saving grace for maintaining my weight,” he said, noting he had lost more than 32 pounds from his normal 240-pound frame.  He trusts that muscle memory will help him regain his strength and stamina sooner rather than later as he begins rehabilitation.

“Nelson is a highly motivated goal-oriented person who will do everything he can to finish what he started,” Dr. Chera said. “His tolerance for pain and his willpower are unbelievable.  With his military background he’s the top of the top mentally and physically, and he tells me this treatment is the hardest thing he’s ever done.”

While in Chapel Hill, Nelson stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

Joining him there at different times over the two months of treatment were his wife, Jan, 55, a middle school reading and special-needs teacher, who has been married to her high school sweetheart for 36 years; their daughter, Allison, 33; and their son, Chris, 35, a Ranger/Special Forces.

While fellow residents were drawn to talk to all of the Corbins, it was the Nelson-Chris duo that turned heads at Family House and at UNC Hospitals.

Chris lost both his legs below the knees when he stepped on an IED in Afghanistan in February 2011.  Nelson, who also was in Afghanistan on a separate mission, flew to his son’s side and stayed with him during his transport to and recovery at Walter Reed Medical Center.

Within four months and two weeks of his injury — more than a year earlier than was predicted or expected by his medical team and wearing prosthetic legs — Chris drove himself from Washington, D.C., to Fort Bragg.  His canine co-worker Ax, who survived the explosion, is still his constant companion, adding the role of service dog to his resume.

“We Corbins don’t do defeat well,” said Chris, matter-of-factly and exhibiting the genuine drive to live life at the extremes that he clearly inherited from Nelson. “I was having a blast, then I had a blast. It could have been worse. I could have been lying on the device, not just stepping on it. If you are still breathing, you can talk about it. But I don’t need to dwell on it.  I wear shorts so we don’t have to talk about my legs.”

It’s that attitude that makes Chris a motivator to all he meets, military and non-military alike, Nelson said.

“Any time you are in an environment where people are dealing with serious illness or traumatic injury, you want to see success, and Chris is a success by every measure,” Nelson said. “With his injuries, everything post-injury was unknown. I know what my post-treatment is going to be, and so does he.  He’s making sure I can focus on the treatment I need so I’m back in the game, getting on with life.”

For both Chris and Nelson getting on with life includes scuba diving, sky diving, triathlons and marathons, hobbies the father and son have always enjoyed and continued to do after Chris lost his legs.

“We were smart enough to make the decision a long time ago that we would have personalities and interests outside of being a soldier so that we could share more things,” Nelson said. “It gives us more face time.  That’s just us, it’s what we do.”

But the cross-country motorcycle trip Nelson and Chris meticulously planned over the two months of Nelson’s treatment will have to wait a little while longer. Chris received a promotion in January that came with a relocation and increased responsibilities. Above all, duty calls.

Wednesday, Jan. 16, 2013

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – These days, Sherman Riggsbee does his best work after 4 p.m., Sunday through Thursday.

Those are the evenings—and nights—the retired award-winning manager in the Triangle hotel industry works as resident manager at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

While different duos of volunteers escort guests to their rooms and orient them to Family House,  it’s Sherman,  a youthful 66, who checks in guests and is the constant greeter, listener, encourager and human Teddy bear when residents arrive weary after long days of appointments, tests and treatments or worriedly sitting at the bedside of a seriously ill loved one.

“Family House is the true meaning of the place,” Sherman—and everybody knows him as Sherman—said.  “You might come here as an individual, but when you leave you are forever a part of this family.  And for me, it’s never like coming to work.”

For Sherman, life’s always been about family—his own by blood and those drawn to him and he to them by choice.

A Chatham County native, Sherman grew up in a household of two hard-working parents who never had the opportunity for formal education, two brothers and a sister.

“We loved each other, and we knew it,” he said. “We sat at the table together for meals and talked and discussed things. We respected privacy, but anything was fair game.”

Sherman and his wife, Jean, created that same supportive environment for their two daughters and a son.  Education was key, and all three children graduated from college with honors. “We always did things as a family, and we still do,” he said.

Sherman’s family by choice grew exponentially through the years. For 22 years he coached Little League sports teams, especially drawn to youngsters who clearly needed a compassionate, disciplined role model.

“Bad kids aren’t born,” he said.  “They are created by bad families and bad situations. Working with them made me a better father.”

And Sherman knows he’s where he’s supposed to be, doing what he’s doing for a reason:  “I don’t want anyone to go through what I’ve gone through,” he said.

In 2003, Sherman, a diabetic, suffered a major stroke that left him paralyzed and unable to walk or talk. At all. Through prayer, willpower, intensive therapy and timely and excellent care at UNC Hospitals, he recovered and founded a stroke support group that celebrates its 10^th anniversary this year.

“When I started talking again after my stroke, I couldn’t stop,” Sherman said, laughing at the truth. “I am a talker, but it’s also about listening to people—really hearing them—and talking about how they can get better, with their health and with who they are as people.  People appreciate that level of caring, and you have to be a caring individual to do a good job here.”

But beyond his own health scare and its teachings, life events involving two loves of his life reinforce for Sherman how precious life is.

His beloved Jean died at age 42 from Huntington’s disease, a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and psychiatric problems.  He cared for her at home during the six years of her illness. Thankfully, none of his children, whom he raised as a single parent while working at least two jobs, has inherited the disorder.

“After her diagnosis, Jean thought I was going to leave her, but I took my vows seriously,” he said. “I made sure she was never alone.  I have such admiration for people who are supportive of their spouses.  I’m privileged to witness that every day at Family House.”

Tragedy struck again when Sherman’s his first grandchild, Amber, 7, died in a car accident in 2001.  A second granddaughter, now 3, is the light of the Riggsbee family’s life.

“Because of these life events, I think that’s why I do so well here at Family House,” Sherman said.  “Many times I’ve asked God ‘Why spare me?’ and the answer I get is ‘I had work for you to do.’  I’m doing it now.”

Sherman’s favorite place at Family House is the communal kitchen and dining room where he joins guests over meals or just for coffee.  While the food prepared by an army of volunteers is excellent and a coffee cup is a common companion, it’s the lure of continuing those conversations that started at check-in that brings Sherman to the table.

“I want to make sure they know I’m here for them so they don’t have to worry about anything but getting better,” Sherman said.  “You develop trusting relationships by talking.  And, yes, I miss them when they leave.”

Beyond the contact with guests, the camaraderie with Family House staff is a secondary reason Sherman loves his work.

“We all get along and we have a good time as we make sure our guests are well cared for,” said Sherman, the lone male among the paid staff.  “I think at my heart I really am my mother. I got my compassion from my own mother and my strength from my father.  And thankfully I had the opportunity to tell them that and thank them before I told them both good-bye for the last time.”

And Sherman gets his own bounty of thanks and good-bye hugs from Family House guests.

“We have guests who have been here for months, and get the all-clear late morning to head home a day or so earlier than expected,” said Janice Ross, interim executive director of SECU Family House.  “Naturally, they’re eager to get back to their own space, but they hang around until Sherman gets here to hug his neck and thank him. Everybody loves Sherman.”

Wednesday, Dec. 19, 2012

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – Betty Hollingsworth made no apologies to Clement C. Moore — or anyone else — when she made stockings for SECU Family House patients with care and convinced bikers from her church to deliver them there.

“When you love people as much as I do, this is what you do,” said Hollingsworth, 58, of Sampson County, a life-long caregiver personally and professionally. “I sew about 60 stockings every year and ask my fellow biker church members to fill them with personal care items and then deliver them where there’s a need. Last year we helped homeless veterans.”

But this year, Hollingsworth gave the nod for patients at SECU Family House to receive the full-size felt stockings after she spent three months at the 40-bedroom hospital hospitality house as caregiver for Pat Polera, a friend of 28 years, who was treated for leukemia at UNC Hospitals.

Minutes from UNC Hospitals, SECU Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.  And it builds community among strangers from across the state and nation who bond forever by virtue of the support and respite they found themselves or when a loved one was seriously ill.

“Family House is dear to my heart because I know what it’s like to be a patient and a caregiver,” said Hollingsworth, herself a nearly 30-year survivor of breast cancer who has enjoyed a career in home health care.  “I made my own list of what should go in the stockings, and I didn’t have to check it twice.”

During October and November, Hollingsworth’s fellow church members at Freedom Biker Church in Fayetteville set about filling the stockings with shampoo, lotion, toothbrushes and toothpaste, hard candy, tissues and pencil and paper. “You always need to take notes,” she said.  Knit caps were added to the stockings for patients who had lost their hair to cancer treatment.

On Dec. 8, the kick-stands came up mid-morning and the bikers roared off on a “Ride for Hope” to deliver the stockings to Family House. The “entry fee” per rider was three cans of food that were donated to the communal pantry at Family House.

By the time the bikers arrived in Chapel Hill, the gray skies of a foggy morning gave way to an unseasonably warm day.  At noon Hollingsworth served bikers and Family House residents a spaghetti lunch, her specialty from her Long Island, Italian heritage. “I made eight pounds of spaghetti,” she said.

After dessert, the stockings were distributed with the same care with which they were made.  A Harley Santa, who goes only by the name Red, led the way.  “Most had never seen a Santa suit of black and orange or a motorcycle that looked like a sleigh,” Hollingsworth said.

Hollingsworth took extra stockings to patients in the bone marrow transplant unit at UNC Hospitals, where Pat was treated.  While there she took the opportunity to visit friends she made at Family House who have returned for additional treatment. “I’ve made friends for life here, and we do keep in touch,” she said.

Additional extras were left at Family House for those who don’t yet to know they’ll be spending the holidays there.

“It’s hard, especially at the holidays, to be separated from those you love whether it’s temporary because you are somewhere for treatment or whether the separation is permanent,” said Hollingsworth, who lost her husband, Kenny, in 2001, and her boyfriend of seven years, Tom, in February this year.

But loss and need fuel Hollingsworth — the mother of Angela, who works for Highland Country Club in Fayetteville, and James, a sophomore at UNC—to help those who otherwise may not have found their place in this world.

“I grew up in New York around a lot of different faiths, so I’m sensitive to not crossing the line and offending anyone by what I say or do,” Hollingsworth said. “Every day I have the opportunity to be an ambassador and talk about my faith and act on it.  I know you can’t just keep on taking, but you have to give back.  And I know you can’t judge on the outside what’s going on inside.”

Like Freedom Biker Church.

“We have a new building that looks like a church in the front, but the sides come up like a garage,” Hollingsworth said. “Our members work on their bikes there and talk to people who are troubled.  By our own admission, we march to a different beat of the drum, but we are a ministry that changes lives.”

“Our church started in a barn,” Betty said, fully mindful of the symbolism in this season of hope and miracles. “What we do as individuals and as a church — everything — is God’s plan.”

Chapel Hill, N.C. – Cindy Korff’s list of Thanksgiving blessings is huge.

“First, I thank the medical team — surgeons, nurses, coordinators, everyone — at UNC Hospitals that saved my son’s life,” said Cindy, 48, of Spokane, Wash., whose youngest son, U.S. Marines Cpl. Devon Raymond, received a liver transplant that cured his Wilson’s disease — the same disease that claimed her older son’s life 18 months earlier.

“Second, I thank the fellow caregivers I met during my four months in Chapel Hill and specifically at SECU Family House who are now friends for life,” said the never-met-a-stranger talker and excellent listener.

“Third, I thank the Wounded Warrior Battalion at Camp Lejeune for their care of Devon once he was released back to base and I flew home,” said Cindy.  “I know he’s in good hands.”

And the list continues:  to her husband, Jonathan, and their daughter Samantha, 15, who held down the home front during her four-month absence and her employer, Providence Sacred Heart Medical Center and her fellow employees, who held her job as a sterile process technician of surgical equipment.

Cindy arrived in Chapel Hill on May 25 after Devon was transferred to UNC Hospitals from Cherry Point where he had become ill over Mother’s Day weekend.  Tests indicated a liver disorder, and Wilson’s disease was confirmed at UNC.

The inherited recessive genetic disorder causes copper overload in the liver and results in neurological impairment and liver failure. It affects one to four persons per 100,000 people and is fatal if left untreated. In order to inherit it, both of the parents of an individual must carry an affected gene.

By the time Devon’s condition was diagnosed, his only option for treatment was a liver transplant.  Despite anxious weeks when an infection ravaged his body as his Wilson’s disease worsened, Devon received a new liver on June 27.

The transplant cured Devon of Wilson’s disease, and his journey from diagnosis to treatment also brought an elusive confirmation:  Wilson’s disease had claimed the life of Cindy’s oldest son, Michael, who died on Jan. 14, 2011, at age 23.

“Their cases are night and day different, but when Devon was diagnosed, we realized there were too many similarities in their symptoms,” Cindy said. “Michael became ill in November of 2010 and was gone two months later.  With Devon’s diagnosis all I could think was ‘I can’t do this twice’.”

But Cindy has no regrets about putting her own life on hold for four months to help Devon heal.

“It’s what you do as a parent,” she said.  “Even if he’s 22 years old and an active-duty Marine who has had one tour in Afghanistan, he’s still my baby.  I know he appreciates my being here for him, but I don’t fully expect him to appreciate it until he has children of his own.”

While in Chapel Hill, Cindy stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals.  Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.  Devon joined her there for three months post-transplant until he was released to return to Camp Lejeune on Sept. 28.

At Family House Cindy connected with other patients and their family member caregivers and she gave support as good as she got.

“As caregivers we get tired, cranky and upset, too, and we could sit down and just talk it out,” she said.  “And sometimes we just talked about stupid, silly stuff to get our minds off the heavy things we were dealing with.  We could goof around or tease and forget our troubles for the day.  Family House is a safe place to do that.

“It’s a helpless feeling when a loved one is so sick.  And sometimes, although it’s not intentional, we caregivers are the ones who bear the brunt of our loved one’s anger, frustration and fear.  There is comfort in working through that pain with others who are on a similar path.  I know I am a much better person for having met these people who are now friends for life.”

Cindy also became friends for life with patients who didn’t always have family with them.   She helped shop for groceries and new shoes, and she was present to cheer when radiation patients rang the gong that symbolized the end of their treatment—and their release from Family House and their return home.  Social media and old-fashioned phone calls keep them close.

Not one to be idle, early on Cindy established a daily routine that not only helped her, but fellow residents at Family House.

“I’m an early riser so I’d get the coffee going in the kitchen and unload the dishwashers—there are four—and put away the clean dishes and utensils,” Cindy said. “Another resident said to me, ‘this place runs best because people like you know where things are.’ I just try to model the behavior I want to see:  be courteous to others, pick up after yourself and don’t take more food than you need.”

Devon won’t be home for Thanksgiving dinner and Michael’s absence at the table and in her life will always leave a hole in Cindy’s heart.  Still, she knows she’s blessed.

“You have to look for the positives, and they are always there,” she said. “And just worry about today, today.  Tomorrow will take care of itself.”

For nearly a year, Ann participated in a national clinical trial at UNC Lineberger Comprehensive Cancer Center for women with breast cancer who also have brain metastases. Upon completion of that trial, Ann participated in another trial at Vanderbilt University. Knife-free radiotherapy surgery on the tumors in her brain followed and was conducted in Asheville where Ann lives.

“The clinical trials helped stabilize my disease,” Ann said.  “I opted for the surgery on the brain tumors, too, although I was terrified and I knew there was a risk of seizures as a side effect. Sure enough, they happened.  I thought I was gone.”

But “gone” took on new meaning as Ann began dreaming about going to Italy to celebrate five years of living with metastatic disease. “I have a dear friend who lives there and I’d never visited,” Ann said. “Besides, I’d been through a lot.”

Ann, the former cardiac nurse who took up painting whimsical animal portraits after her breast cancer diagnosis, got busy making note cards of her favorite paintings to sell to finance her celebratory trip.  Those sales, a few commissioned works and donations from friends and family took care of the airfare.

With an oral chemotherapy “to protect me from the neck down” and her daily anti-seizure medications, Ann spent 30 days in Italy, despite her medical team’s counsel that she should only stay two weeks and some family members’ worry that she shouldn’t go at all.

“I generally have a good temperament and even in the most dire moments I try to keep a sense of humor, but sometimes I get ornery, especially if I’m tired and need a change,” Ann said.  “I had decided I was going for a month, regardless.  You don’t get a ‘get-out-of-death-free card’.  I could die in Asheville or I could die in Milan.”

The worst that happened?

“I had an allergic reaction to bites from a swarm of Italian mosquitoes,” Ann said. “My over-the-counter antihistamine wouldn’t touch it, but a prescription medication did the trick. Otherwise, I had a great time seeing beautiful country and visiting with wonderful people.”   

Upon returning from Italy, Ann has immersed herself in painting at her studio in the River Arts District in West Asheville.  Ann has been invited to display her work at Asheville’s Early Girl Eatery beginning in January.

“I’m thrilled and flattered by that invitation,” Ann said.  “I miss my work as a nurse, but painting brings a lot of joy to my life and helps me reach a lot of people.  I love my life here in the mountains, and although I do miss being so carefree—my anti-seizure meds mean I have to rely on others for transportation—I think I still have a bit of that left in me.  I just have to remember to ‘go for it’ as we all should.”

Ann returned to UNC Lineberger in late July for routine scans and the discussion of participation in another clinical trial.  The news was good.  

“My disease had not progressed enough to make me eligible for the trial,” Ann said.  “I did start a new maintenance chemotherapy that I receive in Asheville, thankfully.  Studies have shown this infusion works best in patients with genetic and triple-negative breast cancer like mine. I do believe in UNC Lineberger and know I can go back there whenever I need to.”

While in Chapel Hill for the clinical trial, Ann stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals.  Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.  

Sometimes, on follow-up visits, Ann was referred to local hotels, which, in agreement with SECU Family House, offer special rates for patients when there is no room at the house.

“Sadly, from Sunday night through Thursday night, we turn away far more families than we are able to serve,” said Greg Kirkpatrick, executive director of SECU Family House.  “Fortunately for these families, 10 local hotels partner with us by offering our guests significantly reduced rates when we are full.  We are so grateful to those hotels, and we hope we can continue counting on them as the need for temporary housing for UNC’s seriously ill patients and their families goes through the roof.”

Carey Anders, MD, assistant professor of medicine in the division of hematology/oncology, co-principle investigator in the national study and leader of Ann’s medical team at UNC, calls Ann “a remarkable patient.”

“Ann has been proactive and persistent in her care and treatment,” Dr. Anders said. “She’s embraced the new therapies and trials as viable options for her.  She uprooted herself and traveled from her comfort zone in Asheville to participate in that first trial.  She has never let fear overwhelm her. I applaud her on so many levels.

“And while we as her medical team are thrilled that her disease has not progressed, we miss seeing Ann in our clinic regularly,” Dr. Anders said.  “She’s always so calming, doesn’t get rattled and always brings a sense of humor.  She’s beautifully infectious that way.  There’s always a buzz and energy when Ann’s here.”

Earlier this fall, Ann attended the wedding of her younger sister Katie, a nine-year breast cancer survivor.  Ann, Katie, 42, and older sister, Kelli, 50, all carry the BRCA-1 mutation, which indicates an increased risk of breast cancer. Kelli remains cancer-free.

“Our mother died of breast cancer at 36 when I was 10 years old,” Ann said. “I remember her saying ‘I pray you girls live to see the day when there is a cure for breast cancer’.  I like to think that my participation in clinical trials has gotten us closer to that goal.  I participate in clinical trials as much for her and other women with breast cancer as for me.”