Written by Elizabeth Swaringen for the UNC Medical Center News Office
For Lilly Parillo, a bone marrow transplant at UNC Hospitals rid her 19-year-old body of chronic myelogenous leukemia.
Now, it’s the mandatory, non-negotiable 100-day post-transplant stay in Chapel Hill that’s taking its toll.
Parillo, of Asheville, had the bone marrow transplant on Oct. 8 for chronic myelogenous leukemia, a condition she was diagnosed with in November 2005. The transplant may also rid her body of juvenile dermatomyositis, an immune system condition that attacks muscles and was diagnosed when Parillo was seven years old. Her 100 days post-transplant end Jan. 15.
“This confinement is a temporary thing, but a long temporary,” said Parillo, who has standing appointments for a doctor’s visit and blood work twice weekly at UNC Hospitals. “I understand the need to stay close to the hospital and the SECU Family House has been the perfect home-away-from-home, but there’s no place like home.
“Still, I’m grateful for the excellent care I received here, the generosity of the unknown international donor who gave the cells for transplant, and a God who has watched over me every step of the way.”
The odyssey leading to the transplant began in Spring 2009. Lilly had been taking Gleevec for a number of years, and surprisingly the chemotherapy drug had kept her juvenile dermatolmyositis in check, but had failed to control her chronic myelogenous leukemia.
“I felt fine and still wasn’t convinced I had leukemia, but all the tests showed that my blood was sick,” Parillo said, “very sick.”
Her oncologist in Asheville, Christopher Chay, M.D., referred her to UNC Hospitals where he had completed his residency after earning his medical degree at the UNC School of Medicine. Jennifer Jaroscak, M.D., assistant professor of pediatric hematology and oncology at the UNC School of Medicine, leads Parillo’s treatment team.
The blood test done in preparation for finding a donor match for Parillo revealed that her lineage included Caucasian of Polish ancestry, Hispanic, African-American, American Indian and Asian-Pacific Islander ethnicities. “I’ve always said she is ‘one in a million’,” said Coco, Lilly’s mother, and an elementary school teacher. “I realized those words took on new meaning in trying to find a donor.”
Caucasians have the greatest chance of finding a perfect match in an unrelated donor, so Lilly’s transplant team knew that the search for a donor would likely have to be international, said Dr. Jaroscak, adding that Lilly’s story reinforces the growing need for people of all ethnicities to have their blood typed and registered with the National Marrow Donor Program (www.marrow.org).
“The process of being typed is easy – a simple blood draw and a swab of the cheek – but the potential for the good that can come from being registered is enormous,” Dr. Jaroscak said. UNC Hospitals sponsors blood typing drives for the registry once or twice a year, free of charge.
(For persons interested in becoming a donor, it is easy to get registered. Register online at http://www.marrow.org/JOIN/index.html, or in person at a local registry drive. Check for the location of the closest drive on the same Web site.)
On May 22, word came that a perfect 10-for-10 match had been found in an international donor, a woman in her 30s with two children. “She’s our needle-in-a-haystack angel,” Coco said.
A tentative date for the bone marrow transplant was scheduled for Aug. 10, but a case of strep throat in June and a common cold in August delayed the transplant until Oct. 8.
In preparation, Lilly was admitted to UNC Hospitals on Sept. 30 and given chemotherapy to kill her sick immune system. She also had her waist-length wavy chestnut hair cut off and her head shaved. “At least my head is a nice shape,” Lilly recalls, “but I want to have hair like that again.”
Over the course of about 90 minutes, Lilly received the donated bone marrow. Within five minutes, it was accepted by her body. The staff sang “Happy Birthday” in recognition of Lilly’s new life.
On Oct. 25 – Day +18 – no leukemic cells were detected in Lilly’s blood and she was released to SECU Family House, a 40-bedroom hospital hospitality house minutes from UNC Hospitals that provides comfortable, convenient and affordable housing for adult patients undergoing treatment for critical illness and trauma and their family member caregivers. Coco – who had stayed by Lilly’s side the 25 days she was hospitalized – joined her there and they settled in for the next 100 days.
“The 100-day post-transplant stay is necessary because with bone marrow transplants, it takes a minimum of 100 days for the body and its immune system to be back to minimum performance levels, barring any complications,” said Dr. Jarosack. “Complications from bone marrow transplants – specifically graft vs. host disease and the risk of infection – can become life-threatening if not tended to immediately. Patients have to be near a bone marrow transplant unit in case a complication arises. It’s not negotiable.”
SECU Family House is the perfect location for bone marrow transplant patients and their families, Dr. Jaroscak said, because beyond the comfortable accommodations and cheerful surroundings, it is five minutes from the hospital and a shuttle provides door-to-door service. “It’s a huge comfort and convenience to our patients – and their families – that enhances their ability to heal and move forward,” Dr. Jaroscak said.
Lilly has experienced some complications – nausea, vomiting, mouth sores, some fever, fatigue – that are common among bone marrow transplant patients, but she continues to improve. And she’s found a wig that will do until her own hair grows back.
“She’s doing remarkably well,” said Dr. Jaroscak. “Patients don’t usually engraft – start growing their own cells – until three to six weeks after transplant. Lilly was engrafting at Day +14. Some of the complications may keep her in Chapel Hill a little past that 100-day mark, but all things considered, she’s doing well.”
Lilly has spent her days enrolled in on-line courses through Blue Ridge Community College, teaching herself Spanish and cross-stitching. Fatigue is still an issue, but when she feels like it, Lilly works out with the Wii Fit in the suite she shares with Coco at SECU Family House. “That work-out is good for both of us,” the mother-daughter duo said, almost in union.
A career in sales and marketing interests Lilly and she’s a fanatic for reggae music and Latin dancing. She danced long into the night before arriving in Chapel Hill on Sept. 30. She hopes to be back on the dance floor soon.
“Lilly’s never been a stay-at-home kind of gal,” said Coco, “but we can’t be home soon enough. And from here on, we’ll look forward to celebrating two birthdays with Lilly – July 2, her original birthday, and Oct. 8, the beginning of her new life.”