When Leisa and Jim Greathouse discoveredtheir son Samuel had a rare blood disease known
as Langerhans Cell Histiocytosis (LCH), they were
determined to ght the disease as a family. Samuel
underwent “salvage” treatment and learned his LCH
was inactive. However, Samuel had a relapse
and needed a bone marrow transplant.Shortly before Samuel was to receive his transplant,
his bilirubin (a pigment formed in the liver) rose,disqualifying him from receiving the transplant.Leisa and Jim hoped Samuel’s bilirubin wouldlower, but also wanted to spend as much time at home
as possible. At the time, a Pediatric PalliativeCare Program was unavailable in the hospital, so they
decided to go home where two-year-old Samuelpassed away Sept. 17, 2007.“[We] can’t help but wonder how improvedour quality of time would have been with a Palliative
Care team walking the journey with us,” Leisa
and Jim said.With UNC Dance Marathon’s nancial help, N.C.Children’s Hospital’s Department of Pediatricscreated a Pediatric Palliative Care Program (PPC).A committee of people interested in palliative
care for children formed several years ago at the
hospital. This committee’s hope was to create
a service where people from many backgroundswould come together to enhance quality of lifefor patients.The program is made up of chaplains, therapists,nurses, physicians and psychologists who form
a clinical consultation service. Nurse practictioner
Diane Yorke said the committee would work together
to provide information on goal setting, difcult
conversations with patients and families, bereavementservices and pain management for dying children.Before UNC-DM was available to help, the hospitaldid not have the financial support it needed
to create the program.In addition to helping with creation and trainingthe committee, UNC-DM provides part of Yorke’ssalary, along with the partial salary of Physician
and Program Co-Director and Medical DirectorElisabeth Potts Dellon and Psychology Fellow
Mary Beth Grimley. The program has a long-termgoal to expand with children’s hospice programsacross North Carolina.
The clinical consultation service, which will
consult with patients and families in the hospital,will open in January 2012. “The key thing at thispoint is that the service wouldn’t be possible
without UNC-DM,” Dellon said. “Pediatric Palliative
Care services are becoming a standard of care
for patients that have life threatening conditions.It is extremely important to the well-being
of the children.”The program reects UNC-DM’s mission to “improvethe quality of life for the patients and families
of N.C. Children’s Hospital.”“The goals of PPC include promoting hope
and healing, two things that UNC-DM also strives
to provide for these families,” said UNC-DMOverall Coordinator Gracie Beard.
UNC-DM’s efforts give families the resources
they need to ensure quality of life for their children.“The Pediatric Palliative Care [Program]…would have been a welcome resource in our situation.Whether it is two years or seventy-two years,
it is the quality of those years shared betweenparents and their child[ren] that truly matter,”Leisa and Jim said.
Pediatric Palliative care Program
Megan TurnerEvery year during UNC Dance Marathon’s
Dancer Recruitment Week (DRW), students signup to take part in 24 hours that often changetheir lives.Last year during DRW,
the Morale committeecaught the attentionof Brian Min, a junior
psychology and women’s
studies double major.
Min said he did not knowa lot about UNC-DM,but did know it wasa great cause he wanted
to get involved with.
“UNC-DM made me realize
that I can actually do something for others,”he said.UNC-DM helps unite the UNC-CH campus
and the event allows students to dance for
“one goal, one cause and one hope,” according
to Min. This connection was his favorite inspiration
during the marathon.When asked, “What does UNC-DM mean to you?”
Min said: “UNC-DM is what Carolina is all about.
The students care about others and realize that
nothing matters if we don’t have a heart.”
Min said the marathon taught him that “we
have the power to change the world.” Thanks
to Min and many other dancers, the lives
of patients and families at N.C. Children’sHospital are being changed.
“UNC-DM is a collaboration of wonderfully
well-rounded UNC students, and it reectswho we are,” Min said.