What We Are About...

Undergoing bone marrow transplant is quite possibly one of the most terrifying and lonely experiences a family may ever endure. The life and death struggle affects not only the patient, but the entire family. The necessity to embrace families, coming from within the community as well as from without is vital to their social, emotional and financial survival.

The Family Support Program (FSP) is a volunteer-based program that provides specific programs, resources and services to patients and families during their time at Duke. It was founded in May of 1997 as a partnership, born through the efforts of families who experienced transplant at Duke and the PBMT staff. The program seeks to embrace families and fully address their needs during the arduous transplant process.

Click here for FSP Staff names and contact information.

Programs

Activity Passport - An incentive program designed to encourage patient participation in daily group activities.  Passports are distributed upon admission.  Stamps are earned by attending an activity, which may then be redeemed for prizes.

Adopt-A-Family Program  Adopt-A-Family is a need-based program designed to assist PBMT patients and families during their time at Duke. Team of volunteers from area churches provide childcare, meals, transportation, computer support and room decorations. Each team consists of 8-10 volunteers (respite volunteers, meal volunteers, social volunteers and computer volunteers), headed by a leader who coordinates the team's service. all team members participate in training sessions led by various staff members and local experts.

ArtMates - A program for patients and siblings to have fun and socialize in a relaxed and creative atmosphere. Through creating new projects every-other week, children are able to express thoughts and feelings that they may otherwise be unable to express in words.

Beads Program  - Through the use of colorful beads as meaningful symbols of the different "steps" along the transplant path, patients build a necklace that provides a visual and tangible expression of their individual journey.

Best Buddies Volunteer Program - Best Buddies volunteer at least 4 hours of their time each week to help decrease feelings of loneliness and isolation that a family on the PBMT unit may feel. Best Buddies participate in a mandatory 12 hours of training prior to being matched with a family. Following their training, Best Buddies provide respite care, friendly visits, occasional home-cooked meals, and many other supportive services.

CellMates Support Group - CellMates is a weekly support group for patients and their siblings. Co-facilitators help to prepare an activity, run the group and clean the Family Lounge before and after an activity.

Community Meals - Teams of volunteers coordinate a home-cooked meal for the families on the PBMT unit. Meals are prepared at the volunteer's homes and delivered and served to families in the Family Lounge. Click here for a list of those organizations which contribute to Community Meals.

Crisis Team Support Program - Staff members respond to a death on the unit or in the PICU by informing, supporting and counseling families and other patients, individually and/or in a group setting.

The Community Counts Newsletter - An inspiring newsletter for patients, families and staff. The newsletter serves as a source of information, encouragement and humor.

Racing Heroes Charity Auction Fund -  Because families are here for six months or longer, finances can become a concern.  The Racing Heroes Fund seeks to alleviate this. The 2002 Racing Heroes Auction raised over $42,000 to help families in need by auctioning NASCAR memorabilia among other donated gifts. One hundred percent of all money goes to families in need as administered by the unit social workers and Family Support Program director. Duke does not keep any money for administering the program and all work and expenses are volunteered.

Rainbow of Heroes Walk - The Rainbow of Heroes Walk is an annual fundraiser for the Duke Pediatric Bone Marrow transplant Family Support Program. Past and current patients, their families, staff and friends of the PBMT program gather for a day of fun activities, visiting, and walking in honor of all of those involved in the program. Volunteers help in every aspect of this event, including set up, running activities, selling t-shirts, and cleaning up.

Rainbow Volunteers - On the PBMT unit, volunteers work in three hour shifts to support families and patients by providing respite, playing with kids, and serving as a general unit resource.

Steps to Recovery Program - Patients are encouraged to walk laps in the hallways of 5200 and receive "footprints" that hang on their IV pole as a way to track their progress.


Resources

Pagers - When a child is on the PBMT unit, emotions and stress are at a high level. Families are offered pagers while their children are inpatient. These pagers provide a sense of security for family members when they have to leave the unit. The caregivers know that they can instantly be contacted by a nurse, family member, or the child.

Welcome Bags - Upon admission to the unit, the Family Support Program team will distribute a welcome bag to families. This bag includes a pager, phone cards (donated by the Katie Swaney Foundation), a brightly colored pillowcase, a colorful laundry bag, a quilt, a disposable camera and several other small items. This is the Family Support Program's way of saying welcome. 

Discharge Bags - Upon discharge from the unit, the Family Support Program (courtesy of the Me Fine Foundation) distributes a discharge bag to families.  This bag includes paper towels, disinfectant wipes, a cooler to transport medicine to the clinic, a set of plastic drawers to store supplies, a tray to help sort and organize medicine, and a garbage can.  

Parking Passes - Upon discharge if a family needs to drive to the clinic, a 10 ticket set of parking passes will be distributed on a one time basis.

Volunteer Opportunities

Adopt-A-Family Program

Best Buddies Volunteer Program 

Community Meals

Rainbow Volunteers