Pediatric Transplant Nurse Focuses on Patients’ Health – and Happiness
Wearing a Lion King t-shirt over
her scrubs and a huge smile on her face, Sarah Bryant, RN, BSN, CPHON, is an
unexpected ball of energy in the Stem
Cell Transplant Center at Dana-Farber/Boston Children’s Cancer and Blood Disorder Center.
“People think this place is
depressing, but we’re a lot of fun,” says Bryant, who has
worked in the Stem Cell Transplant Center for five years, two as a nursing
assistant and the past three as a registered nurse.
Bryant and her
colleagues treat children and teens with a variety
of cancers, blood disorders, and genetic deficiencies in the 14-bed
transplant unit on the sixth floor of Boston Children’s Hospital, one of the largest
and most experienced pediatric
stem cell transplant programs in the United States.
As a nurse, Bryant acts as the
“eyes and the ears” on the floor, administering chemotherapy, blood product
infusions, and stem cell (bone marrow) transplants, while communicating
patients’ needs and preferences to their doctors. “We get to know the kids really well because
we’re with them all the time and we can advocate for them well,” she says.
Nurses in the Stem Cell
Transplant Center at Dana-Farber/Boston Children’s are paired with an
experienced nurse for the first 8-12 weeks of their orientation, during which
the new nurse learns to care for patients during each stage of the transplant
process. The Stem Cell Transplant Center also practices primary nursing,
meaning each patient is designated a primary nurse to lead his or her care,
giving patients – and their families – a comforting sense of continuity
throughout treatment. This continuity rings true in the outpatient Jimmy
Fund Clinic as well, which shares Financial
Assistance and Child Life programs with the hospital floor. When children
are discharged and begin receiving care at the Clinic, the stem cell nurses
remain in contact, and should patients need to be admitted again, they will
have the same care team they began with. This system makes things easier for
the family, and for the nurses as well. Bryant explains: “You feel like you can
stand up for them better, and you know what can make the kids’ days better.”
Dana-Farber/Boston Children’s, the only
pediatric center in New England to receive the Cigna LifeSOURCE Transplant
Network Center of Excellence status for bone marrow transplant and one of the
only pediatric graft-versus-host disease clinics in the country, regularly
welcomes patients from across New England, the Midwest, and Florida, and as far
away as the United Arab Emirates, Columbia,
and Russia. In each case, the care team is in constant contact with patients’
primary pediatricians and other specialists to ensure as seamless a transition
back to their regular care as possible. The
team has also paved the way for gene therapy, participating in new trials using
a vector to replace missing genes in diseases including X-linked severe combined
immunodeficiency 1 (SCID-X1), Wiskott Aldrich Syndrome (WAS), and adrenoleukodystrophy (ALD).
For Bryant, this openness to new treatment
strategies, and the speed of research from the bench to the bedside, is crucial:
“The gene therapy trial was being developed in the lab when I started here, and
now I get to give one of the first patients his repaired cells.”
While Bryant and her fellow nurses are focused
on their patients’ physical health and safety, they also closely monitor
patients’ happiness and mental health. Programs like “Dec
my Room” allow patients to feel more at home in the
hospital by adding personal touches to their rooms. Nurses also make transplant
days into celebrations with patients and families, and even let children press
the “start” button when their new stem cells are being infused.
Each patient and family at Dana-Farber/Boston
Children’s also gets a psychosocial
consultation. While not everyone takes advantage of it in
the long term, “It’s nice to have someone to talk to other than your nurse or
your parents,” Bryant says. “The psychosocial team has a really good idea of
what the patients and family like and what helps them cope, whether it’s a 5-year-old
who has trouble taking meds or a teenager who’s upset that she isn’t going to
be with her friends.”
Additionally, stem cell transplant patients have
access to an outdoor courtyard specifically for immuno-suppressed children and
their families, arts and crafts programs, and games. For
the rest of the family, there’s “Just for Sibs,” which organizes
activities for patients to do with their siblings, and programs for parents,
including coffee hour, paint night, and massages.
“Nobody likes coming to the hospital or going
to the clinic,” Bryant acknowledges. “But, if they have the same nurses who
they know and like and they have activities, it makes it a little better—for
the families, too.”
Although she works long hours, you wouldn’t
know it from Bryant’s infectious energy, which she credits in part to the
patients, who stay positive even after weeks or months of isolation in the
hospital.
“If they want to have a dance party at 2 a.m.,”
she says of her patients, “I’ll have a dance party!”