Media contact: Tom Hughes, (919) 966-6047, firstname.lastname@example.org
Monday, Dec. 19, 2011
Written by Elizabeth Swaringen for UNC Health Care
CHAPEL HILL, N.C. – Serious illness can either splinter or solidify a couple’s relationship. Chuck and Brittany Pope of Grifton, N.C., have experienced both. In that order.
Chuck, now 26, was diagnosed in March 2009 with a rare blood-borne cancer called acute lymphoblastic leukemia (ALL) B-cell type when the Pope’s son, Mason, was seven months old. Following a long course of maintenance therapy, Chuck was in remission until March 2011 when the disease relapsed in his central nervous system.
“When I was first diagnosed, I was afraid I was going to die,” Chuck recalled. “I isolated myself from everyone, including Brittany and Mason. I didn’t have the model of a very affectionate, loving family that she did.”
“So I left him so he could have his space,” said Brittany, 24. “After a while, we realized we couldn’t live without each other. He said, ‘let’s just go get married’ and a week later, we did.”
The recommended treatment for Chuck’s relapsed diseases is a stem-cell transplant, and Chuck’s younger brother,
Robert, was a perfect match. Robert donated 13 bags of cells — with about a million adult stem cells per bag — and Chuck received the transplant on July 8.
“Chuck is fortunate that his brother Robert was a full ‘match,’” said Stefanie Sarantopoulos, MD, PhD, assistant professor of medicine at the UNC School of Medicine, a member of the UNC Lineberger Comprehensive Cancer Center and the lead physician on Chuck’s medical team.
“Donor ‘matching’ is based on genes and proteins and has nothing to do with blood type,” Dr. Sarantopoulos said.
“There is a one-in-four chance that a sibling would be a match, and it has to be a sibling who has the same mother and father as the patient. It’s not always easy to find a sibling match and on rare occasions even with siblings when there is a match, there is sometimes a reluctance to donate even though process is growing increasingly easier for the donor.”
Receiving those stem cells is a dramatic moment for a patient, and it is sort of ceremonial, said Dr. Sarantopoulos. “The cells are prepared in the patient’s room by expert technicians and nurses in front of the family and they are infused by a nurse using a syringe. In Chuck’s particular case it took a bit of time, but Chuck got all the cells he needed.”
Based on what is known about adult B-cell type ALL, it was not unexpected that Chuck would relapse despite aggressive chemotherapy and need the transplant, but still it was unexpected for the Popes.
“It was a very hard discussion to have,” Dr. Sarantopoulos said. “Young people with a two-year-old son, bad disease and toxic therapy aren’t a natural grouping, but I give Chuck and Brittany a lot of credit. They are very realistic, and — putting all the odds behind them — chose to plow forward.”
Little did Brittany know that her ongoing training as a nurse would be so useful so soon to someone as dear to her as Chuck.
“I come from a long line of nurses in my family,” Brittany said. “I always want to be able to help people, and it comes naturally for me. I think I’ve known enough to really be able to help Chuck.”
Dr. Sarantopoulos agrees.
“She does step up to her care-giving role very naturally, and I give her a lot of credit,” Dr. Sarantopoulos said. “For example, when Chuck was released from UNC Hospitals to SECU Family House for his 100 days post-transplant stay, Brittany noticed some symptoms that indicated a possible infection. She called the floor and got him re-admitted. There was some urgency to the situation, and Chuck did well because of her attention.”
The SECU Family House stay is a requirement for stem cell transplant patients because their first 100 days after transplant require nearly daily care from sub-specialized clinicians like the nurses, physicians’ assistants Amber Essenmacher and Bob Irons, and pharmacist Kamakshi Rao who have followed Chuck in the BMT clinic.
SECU Family House is a 40-bedroom hospital hospitality house minutes away from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.
“Being at Family House you feel helpful because everybody’s going through something and you can offer encouragement or just a listening ear. We’ve loved this place, but we’re ready to go home,” Brittany said as the milestone 100-day limit neared. “Family House has made it easier, but we’ve missed Mason, and my parents have been such a help with him.”
Chuck said the fear of death still looms, but it is not as front-and-center as it once was. He marvels that somehow his vision has improved through all the toxic treatments, and he no longer needs his glasses even though he was told that one of the toxicities could have caused cataracts. So far, none have surfaced.
“We’re both hard-headed, and this journey has brought us closer,” Brittany said. “We know the chances of Chuck staying in remission following the transplant are about 20 percent. That hits home.
“But we have our faith, and we know God is the great healer,” she added. “Not to take anything away from the care we’ve received at UNC Hospitals because they have done well by us. But we know prayers work and He is listening.”
To learn more about how to be typed for the national bone marrow registry, contact the National Marrow Donor program (www.nmdp.org). Being typed involves a cheek swab for a DNA sample. Once you are listed in the registry, the chance of getting called is rare, but it’s important to follow-through if you are.