Haslinger Family Pediatric Palliative Care Center 2011-2012

Transcription

2011-2012
Haslinger Family Pediatric
Palliative Care Center
Report to
the Community
Inside
Director’s Letter to the Community ........................................................... 3
A Palette of Care..................................................................................... 4
2011-2012 Clinical Activity ...................................................................... 5
Awards and Recognition .......................................................................... 7
Milestones .............................................................................................. 8
We received a beautiful letter
Meet Logan .......................................................................................... 10
from one of our parents
Programs ............................................................................................. 12
describing how much our
palliative care team meant
Volunteers ............................................................................................ 14
to her and her family. She
Meet the Kneppers ................................................................................ 16
addressed the letter to “The
Palette of Care Team.” In that
phrase, she described so well
what we strive to be – a
transdisciplinary collection of
colors that blends together on a
Education ............................................................................................. 17
Meet Lucas ........................................................................................... 22
Special Projects .................................................................................... 23
Financial Support .................................................................................. 24
canvas to paint the best picture
of care for all of our families.
Each painting is unique,
created by our patients who
hold the brush. The artwork
used here is one child’s vision
of “the palette of care team” in
her life – 11-year-old Cassidy
Jackson.
Find us on Facebook, twitter
and Pinterest
The Haslinger Family Pediatric Palliative Care Center has a
Facebook page featuring center updates and events, and links to
articles, websites and discussion groups on bereavement, chronic
illness and more. We would love to connect with more of you.
Visit us at facebook.com/haslingerpalliativecare.
For more updates, you can also follow us on twitter at
twitter.com@haslingerppc or on Pinterest at pinterest.com/haslingerppc.
2 2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY
Director’s Letter to the Community
This year, the Haslinger
Family Pediatric
Palliative Care Center’s
Report to the Community
captures activities from
2011 and 2012, years
in which a recurring
theme seems to be
“innovation.” We are
always striving to find
innovative ways to
provide better care to our
patients and families as
they face life-threatening
conditions. While that
remains our primary
goal, we also appreciate
when our efforts receive
national recognition – furthering another goal to
“spread the word” about the incredible benefits of
pediatric palliative care for children of all ages and
their families. We hope to set an example that
educates and inspires pediatric palliative care
programs to go above and beyond in the care they
provide, and to discover their own innovations.
Our program is continuing to grow through
funding from the Center for Medicare and Medicaid
Innovation. In partnership with Nationwide Children’s
Hospital, we are part of a three-pronged pilot effort
to examine models of care delivery that further the
“triple aim” of healthcare: improved quality, reduced
cost and improved health. We are focusing
on care coordination for children with complex
medical conditions as we streamline communication,
resources and community-based support to provide
better, more cost-effective care where families prefer –
in their own homes and communities.
Some other highlights include:
•
In 2011, we established the first endowed
chair position in pediatric palliative care,
which was named in my honor. I am incredibly
appreciative of this recognition, but it would not
have been possible without the entire palliative
care team and our generous donors.
•
In 2012, we were honored to receive the
Circle of Life Award from the American Hospital
Association, a national award that recognizes
innovations in palliative and end-of-life care.
•
The Haslinger Center turned 10 in 2012 –
a tremendous milestone. We have been
privileged to serve more than 1,600 patients
during this time, making us one of the largest
pediatric palliative care programs in the country.
In honor of our anniversary, many volunteers and
staff worked hard to plan a party at the Akron Civic
Theatre, which featured great food and a lip-synching
contest, with the proceeds from the voting benefiting
our center. Generous voters and sponsors made
our celebration a very successful fundraiser and
contributed to some very special memories and
YouTube moments. A heartfelt “thank you” to
everyone who helped or attended. We hope you
will celebrate future milestones with us.
We hope you will enjoy reading about these and
other innovative activities of the Haslinger Center.
As always, we’d love to hear from you if you’re
interested in learning more about our program,
would like to make a donation or volunteer, or
know a family that might benefit from our services.
Thank you for your continued support of the
Haslinger Family Pediatric Palliative Care Center and
Akron Children’s Hospital.
Blessings,
Sarah Friebert, MD
Director, A Palette of Care
Haslinger Family Pediatric Palliative Care Center
2011-2012 HASLINGER FAMILY PEDIATRIC PALLIATIVE CARE CENTER | REPORT TO THE COMMUNITY
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A Palette of Care
Haslinger Family Pediatric Palliative Care Center
The Akron Children’s Hospital Haslinger Family
Pediatric Palliative Care Center serves children, from
before birth and into adulthood, who have complex,
chronic or serious medical conditions. Pediatric
palliative care provides an additional layer of support
for families on difficult medical journeys, in partnership
with cure-directed care.
Our nationally recognized palliative care team works
in collaboration with a child’s other healthcare providers
to coordinate care and improve communication,
as well as to help families make informed choices
regarding difficult medical decisions.
Palliative care patients receive comprehensive,
interdisciplinary care to control pain and other
symptoms. Support is also provided for emotional,
psychological, practical, spiritual, educational and
developmental issues which may contribute to suffering
or interfere with healing. Our care is customized for
each patient, allowing each family to choose from a
variety of programs and services that will best meet
their needs.
Our Mission
• To integrate legendary, indispensible and
individualized pediatric palliative care into
the journey for all children, adults and their
families living with chronic, complex and/or
life-threatening conditions of childhood.
• To provide leadership in education, research
and advocacy initiatives in pediatric palliative
care locally, regionally, nationally and
internationally.
Carsen Hays
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2011-2012 Clinical Activity
New Families Served and Patient Consults – 2002 - 2012
New Families Served
Patient Consults
500
400
300
200
100
0
2002
2003
2005
2004
2006
2007
2008
2009
2010
2011
2012
Total families served - 1,659 Total patient consults - 2,683
46 Counties Served – 2002 - 2012
Patient Gender
2011
2012
Ashtabula
Lake
Fulton
Male
60.7% 58.7%
Female
39.3% 41.3%
Geauga
Wood
Sandusky
Cuyahoga
Erie
Lorain
Trumbull
Medina
Ashland
Richland
Van Wert
Wayne
Holmes
Knox
2011
Delaware
Coshocton
Franklin
Muskingum
Shelby
Neurologic/Neurodegenerative 22.6% 16.3%
Hematologic/Oncologic
15.5% 20.4%
Sudden/Burn
12.6% 12.4%
7.1%
10%
Harrison
Guernsey
Belmont
Monroe
Athens
Clermont
Complex/Chronic
7.5%
Carroll
Washington
9.6% 14.9%
11.3%
Columbiana
Perry
Butler
Genetic/Chromosomal
Stark
2012
Miami
Cardiologic
Mahoning
Tuscarawas
Marion
Top 6 Patient Diagnoses
Portage
Summit
Huron
Pike
Other States Served
Florida
Maryland
Georgia
Nebraska
Indiana
New Hampshire
Pennsylvania
West Virginia
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2011-2012 Clinical Activity
Types of Insurance – 2011
Types of Insurance – 2012
Medicare - 2.5%
Medicare - 2.5%
Unknown - .8%
Bureau for Children
with Medical Handicaps
(BCMH) - .8%
None/Self Pay - 2.5%
Private - 32.2%
None/Self Pay - 5%
Unknown - 5%
Bureau for
Children with
Medical
Handicaps
(BCMH)
.5%
Medicaid/
Medicaid HMO
61.2%
Private - 32.3%
Medicaid/
Medicaid HMO
54.7%
Patient Age – 2011
> 20 yrs. - 6.3%
16-20 yrs. - 14.2%
Patient Age – 2012
> 20 yrs. - 6%
16-20 yrs. - 10%
< 1 yr. - 54%
11-15 yrs.
9.2%
1-10 yrs. - 16.3%
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< 1 yr. - 50.7%
11-15 yrs.
9.4%
1-10 yrs. - 23.9%
Awards and Recognition
National Healthcare Innovation
Through a three-year award from the Center for
Medicare and Medicaid Innovation (CMMI), the
Haslinger Center has been able to develop a case
management team consisting of social workers,
registered nurses and a dietitian. This team is making
home visits and coordinating the care of children
with neurological diagnoses and gastrostomy tubes
(g-tubes) for feeding. Our overarching goal is to
improve the quality of life and health system
satisfaction for patients with complex medical needs.
The specific aims being measured include decreasing
mean hospital days for children receiving tube
feedings, providing comprehensive care coordination
for children with a neurological diagnosis and g-tube,
and improving nutritional status of this population
so they fall within a healthy range for weight on a
standard growth chart.
Todd Linden, president and CEO of Grinnell Regional Medical
Center, presents Sarah Friebert, MD, founder and director of the
Haslinger Center, with the Circle of Life Award.
Circle of Life Award
In 2012, the Haslinger Center was honored to receive
the Circle of Life Award from the American Hospital
Association (AHA). The award recognizes innovative
programs in palliative and end-of-life care.
After submitting a lengthy application highlighting our
program’s services, research and other aspects, we
were chosen as one of nine finalists. We then hosted
a day-long site visit for representatives of the Circle of
Life selection committee.
We were invited to accept the award at the American
Hospital Association Annual Meeting in San Francisco.
Sarah Friebert, director of the Haslinger Center,
Lisa Long, office coordinator for the Haslinger Center,
and Norm Christopher, Akron Children’s chair of
Pediatrics, traveled to San Francisco to attend the
award ceremony and other AHA events.
Tyler Esposito
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Milestones
Endowed Chair Established
The Sarah Elizabeth Friebert, MD Leadership
Chair in Pediatric Palliative Care, named in honor
of the founder and director of the Haslinger Center,
was officially established in 2011 to support the
advancement of patient care, research and education.
A celebration reception was held in May 2011
for donors, volunteers and staff to recognize its
establishment as the first pediatric palliative care
endowed chair position in the country.
Haslinger Center Celebrates
10 Years of Serving Patients
The Haslinger Family Pediatric Palliative Care Center
turned 10 in 2012! A huge celebration was held
at the Akron Civic Theatre in honor of our birthday.
Todd Meany from Fox 8 Cleveland emceed the event
and his band Ace Molar performed.
The highlight of the night was a lip-synching contest,
which featured acts by many local personalities,
including the palliative care team performing “Car
Wash” and Dr. Sarah Friebert performing dressed as
Tina Turner. Guests could vote that night by making a
donation for their favorite act, in addition to voting
online before the event. Generous sponsors and
donors helped make the celebration a successful
fundraiser as well.
Guests enjoyed visiting with Akron Children’s Doggie
Brigade, and delicious food and desserts from Totally
Cooked Catering and the West Side Bakery. Thank
you to everyone who helped with or attended the
celebration, and everyone who has supported us
the last 10 years. We appreciate everything you do
and look forward to many more years of serving our
patients and families.
Haslinger Center Timeline
2002200320072008
Dr. Sarah Friebert
founded the Haslinger
Family Pediatric
Palliative Care Center.
The center received an
endowment commitment
from the Haslinger family.
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The center created a
pediatric palliative care
fellowship program to
further its commitment to
education and training, and
to this day, it’s one of only a
handful in the country.
The center hosted a
national pediatric
palliative care conference
in Akron, attracting 480
participants from 30
states.
The center was chosen to
be one of two Pediatric
Palliative Care Leadership
Center training sites by
the Center to Advance
Palliative Care.
The Children’s Garden
of Hope & Healing is
completed.
Abigail Myers
200920112012
Dr. Friebert was honored
with the Children’s Miracle
Network “Children’s Miracle
Achievement Award” for her
transformational work.
The center received ACGME
accreditation for its
palliative care fellowship.
Akron Children’s received a
$1.2 million donation to
create an endowed chair
in pediatric palliative care,
believed to be the first of
its kind in the country.
The center is honored with
the Circle of Life Award
from the American Hospital
Association.
The Emily Cooper Welty
Expressive Therapy Center
opened. It’s the region’s only
dedicated expressive therapy
facility designed for patients,
families, staff and the community.
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Laura and Logan Keith.
Meet Logan
Three-year-old Logan Keith of Akron continues to
amaze his doctors and family with his miraculous
recovery from a devastating brain injury.
“Medically, they can’t explain his recovery. His
doctors didn’t expect him to live,” said Logan’s
mom, Laura, noting that her son’s pupils were fully
dilated for seven days while his intracranial pressure
remained dangerously high.
Not only has Logan survived, he continues to thrive
more than one year later.
Shortly after he was admitted to Akron Children’s,
Logan underwent an emergency craniotomy to insert
a VP shunt to relieve the swelling and fluid that was
building in his brain.
He spent the next three months at Akron Children’s,
including two months in the Pediatric Intensive Care
10
Unit (PICU). After that, he spent two more months
in an inpatient rehabilitation facility, followed by
intensive rehabilitation five days a week in Akron
Children’s Day Rehabilitation program. Through
this program, Logan received all-day therapy for
two months, but would return to his home every
evening to be with his family, which also includes
his 13-year-old sister, Lauren.
Through it all, Laura relied on her faith and the
support she received from the staff in the Haslinger
Family Pediatric Palliative Care Center.
“I prayed a lot and just put it on God,” she said.
One of the first staff members she met from the
Haslinger Center was social worker, Denise Powers
Fabian, who was not only a great source of comfort,
but also helped Laura with practical issues, such as
applying for a leave of absence from her job
so she could stay near her son.
“Denise was awesome and really helped me get
through what was an emotionally overwhelming and
difficult time,” said Laura. A child life specialist
from the center helped Lauren understand what was
going on with her baby brother, in terms she could
understand.
At this point, Laura also met the center’s palliative
care physicians who were part of Logan’s care team
in the PICU. They helped Laura make difficult
medical decisions regarding his care and made sure
her concerns were addressed.
The staff in the Haslinger Center also continues to
assist the Keith family with these ongoing needs,
including coordinating Logan’s medical care and
helping Laura identify other resources that are
available for her son.
When the Keiths were living in a two-bedroom
apartment, Denise, the social worker, helped Laura
find a nice home for her family.
“They’ve been there to help me every step of the
way, especially when I didn’t know where to turn,”
Laura said.
Although Logan’s condition improved, his prognosis
still remained grim.
“He was expected to have major disabilities and
we weren’t sure if he’d ever be able to walk or
talk again, or even be able to breathe on his own,”
said Laura.
Once again, Logan defied the odds. He continues
to receive outpatient physical therapy at Akron
Children’s once a week. He’s able to walk, although
he has some muscle stiffness that affects his gait.
He now attends an integrated preschool with other
children who have special needs, along with those
whose development is on track.
Since Logan has begun attending preschool, Laura
has seen significant progress in her son. He laughs,
plays, loves to cuddle and is learning new words. He
also has the twinkle in his eyes that Laura remembers.
“I have my boy back,” she said.
Logan still has the VP shunt, so he continues to see
the pediatric neurosurgeons at Akron Children’s,
as well as specialists in neurology, physiatry and
ophthalmology, in addition to his weekly physical
therapy sessions.
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Programs
Emily Cooper Welty
Expressive Therapy Center
Akron Children’s Emily Cooper Welty Expressive
Therapy Center is the only facility in northeast Ohio
designed for patients, families, staff and the community
to receive holistic healing through a variety of modalities,
including art, music, theater and dance. Here patients
use the creative arts to deal with illness, cope with
difficult emotions and find comfort. It’s staffed by
art and music therapists who are trained to address
the psychosocial and physiological concerns that
accompany serious illness.
In 2011 and 2012, a variety of music and art
therapy programs and workshops were held, as well
as performances by community organizations and
local musicians, actors and dancers. To learn more,
go to akronchildrens.org/expressivetherapy.
2011 Artist-in-Residence
The Expressive Therapy Center received a grant from
LiveSTRONG, which funded an artist-in-residence
for 2011. Emily Dennis filled that position for the
year and was able to work on many art projects with
hematology/oncology patients. This culminated in
an art show at the end of the year, the Gallery of
Strength, featuring the artwork created through this
project.
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Grief and Bereavement Services
Individual and Family Counseling
is available for bereaved family
members as needed.
Family-centered, follow-up phone
calls are made to bereaved families
by palliative care volunteers and staff.
Good Mourning Grief Support
Series helps children and their
parents understand and deal with
grief resulting from the death of
a loved one.
Support for Your Journey –
A Resource Guide for Grieving
Families provides information
on a host of available community
resources and other services to help
families through the grieving process.
Hope for Grandparents Grief
Support Series offers support for
grandparents who have experienced
the pain of losing a grandchild.
Precious Parents is a pregnancy
and infant loss support group run by
parents for parents.
Supporting Super Kids is a support
group for children ages 5-16 who
have a family member coping with a
chronic illness.
Thursday Night Grief Support
Series is co-facilitated by
professionals and parents to
provide information and support
to bereaved parents.
Kamp Kaleidoscope is a free
day camp for bereaved children
and young adults.
The Compassionate Friends,
Akron Area, is led by parent
facilitators and offers friendship,
understanding and hope to
bereaved families.
Annual Remembrance Service at
the Holidays is a non-denominational
service featuring speakers, music, a
candle-lighting ceremony and a slide
show of the children who have been
lost. It’s a huge event, which would
not be possible without hundreds of
volunteers and hospital staff members.
Since the first service was held in
1984, it has grown every year.
In 2012, approximately 600
people attended the service,
which is now hosted by The
Chapel at either their downtown
Akron or Green location. In 2012,
the Compassionate Friends of
Akron sponsored inspirational
speaker, singer and songwriter
Alan Pedersen. The music of this
bereaved father greatly enhanced
the service. Alan also gave a lecture
at Akron Children’s the day after
the service to physicians, residents,
nurses, social workers, other hospital
staff and volunteers. He will return
in 2013.
Funeral Assistance Program
provides up to $500 for funeralrelated expenses to needy families
whose children have died at Akron
Children’s. This provides for the
basic cost of cremation and a
service, or can help defray the
cost of burial or other funeral
expenses. This is an ongoing
need and something we feel is
important to offer to families. If
you’re interested in supporting
or raising funds for our Funeral
Assistance Program, please contact
our office.
In 2012, our program received
$6,000 as the beneficiary of the
Akron Children’s Kids Are Number
One Run. This annual 5K run and
family fun day is organized by the
hospital’s Employee Foundation as
a way to give back.
For more information about any of these programs, please visit our website at
akronchildrens.org/palliativecare or contact the Palliative Care office at 330-543-3343.
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Volunteers
Our dedicated volunteers donate hundreds of hours
to help our patients and families. With their help,
we are able to offer many additional programs and
services that are of great benefit to the patients and
families we serve.
This includes home visits and phone calls to patient
families; the creation of beautiful handmade cards to
send to patients on their birthdays and to bereaved
families on special days; portraits for patient families,
including complimentary, professional photos through
Flashes of Hope and Now I Lay Me Down to Sleep
and drawings of children for bereaved families through
Faces of Angels; and assistance with many other
programs and special events.
focused mission and identify goals for moving forward.
During the retreat, a new name was selected, indicating
the members’ desire to expand from an advisory role to
a more active leadership role.
The team has continued the Holiday Elves program,
which provides holiday wreaths, trees and other treats
to palliative care families. Many members of the team
serve as volunteers in the Haslinger Center and the
Expressive Therapy Center and assist with events and
fundraisers. They have also committed to raising funds
for our partnership with a pediatric palliative care
program in Kenya, a special project we began in 2012
(See page 23.).
Community Leadership Team Members
Community Leadership Team
The Community Leadership Team (formerly the
Community Advisory Board) began in 2003 for
members to serve as liaisons to the community and
promote the center’s services. As its membership
and purpose has shifted over the years, the group
decided to have a retreat in 2012 to create a more
David Anthony
Kathy Bearer
Barbara Brown
Shelly Brown
Eileen Burg
Catherine Clark
Bill Cushwa
Paula Dutton
Patti Kelleher
Andy Lamb
Meg Lamb, Chair
Sue Locke
Jody Miller-Konstand
Jaynee Nance
Marie Parker
Vicki Parisi
Joe Randazzo
Elizabeth Sheeler
A Heartfelt Thank You to Our Volunteers
Sandy Adkins
Ari Aviram
Emily Bauman
Emily Bennett
Linda Bowlin
Libert Bozzelli
Madeline Bozzelli
Allison Brookes
Barbara Brown
Anne Bruno
Sharon Bursky
Connie Buzek
Kristen Carbary
Cierra Clark
Bailey Cole
Gail Cousino
Laurie Cousino
Alex Davis
Ned Davis
Renee Anthony Dee
Ginny Deighton
Tom Deighton
James Dowdell
Paula Dutton
Katie Durr
Tonya Durst
Nick Edwards
Jack Edwards
Anna Ehrmantraut
Allison Ewing
Ed Fabian
Lianna Fertig
Ulia Fisher
Christina Foisie
Laura Francis
Michelle Friess
Jean Frisone
Nancy Gartner
Tammy Gersman
Jennifer Greulich
Paula Gross
Melissa Gurik
Robin Habunek
Cheryl Hatcher
Jackson
Henderstrom
Carolyn Hofmann
Katy Holland
Sara Holm
Nora Houser
Katie Humbel
Judy Huehner
Tiffany Jett
Brandon Johnson
Mejgon Joya
Alex Kempf
Karen King
Terrie Kisha
Ariel Klusty
Lori Konwinski
Bridget Lacy
Andy Lamb
Matt Lamb
Meg Lamb
Sol Lee
Kellie Lightfoot
Allison Lint
Ellen Lintner
Fred Linxweiler
Kelly Livesay
Sarah Locke
Sue Locke
Nancy Ludwick
Russell Malone
Rhea Marcinko
Catherine May
Audra McCoury
Taylor McDaniel
Bill McGinnis
Mary Jane McGinnis
Emily McGuirk
Emily McKenna
Stephen McNulty
Kristen McTaggart
Laurie Mellion
Janet Miller
Sandra Montgomery
Brian Murphy
Mae O’Donnell
Bill Oliver
Cynthia Oliver
Jeff Otterman
Mary Beth Palmer
Joe Parisi
Elizabeth Parker
Marie Parker
Taylor Parker
Carolyn Parry
Debbie Patterson
Emily Paulhardt
Alex Petroski
Tess Powers
Tiffany Price
Camryn Rabourn
Akhinav Raval
Ann Ries
Leslie Robbins
Leslie Saralino
Denise Scala
Clare Scantling
Nicole Schreffler
Michelle Sergi
Danielle Shatrich
Daniel Snyder
Nikolche Sobevski
Rhonda Spada
Emily Speerbrecher
Carol Stanley
Lisa Straughn
Madison Straughn
Diane Tobias
Nicole Valentino
Christin Vargo
Holly Weisbrodt
Terry Wells
Alicia Weston
Penny White
Shannon Wilkes
Alexis Williams
Sataire Williams
Jill Wolf
Grace Worley
Rachel Wurzel
If you are interested in becoming a volunteer, please contact us at 330-543-3343 and let us know how you’d like to get involved.
14
Since joining the Community Leadership Team eight
years ago, Lamb has been involved in a host of projects
aimed at building awareness for the Haslinger Center
and furthering its mission. This includes assisting with
continuing education programs, making follow-up phone
calls to families, sending cards to bereaved families,
and helping with the Holiday Elves program which
provides trees, wreaths and other treats to families.
She’s also been involved in many of the center’s special
events, such as the recent 10th birthday celebration and
an open house in the Expressive Therapy Center, and
is now helping to get the center’s latest special project
under way, a partnership with a pediatric palliative care
program in Kenya, Africa.
“As a member of the Community Leadership Team,
I’m here to support any activities or programs that come
up,” said Lamb. “As the services have grown, so have
the needs.”
Meet Meg Lamb
Because of her healthcare background and community
volunteerism, Meg Lamb was an obvious choice for
the Haslinger Center’s Community Leadership Team.
A licensed pharmacist, Meg and her husband, Tom,
own Sand Run Pharmacy in Akron.
However, the day she was supposed to attend her first
team meeting in 2004, her 12-year-old son Matt was
admitted to Akron Children’s Burn Center with a serious
injury. He would spend the next month in the hospital,
followed by 18 months of ongoing care, giving her a
whole new perspective on Akron Children’s Hospital.
“Previously we had been at Children’s for only minor
problems, like stitches,” said Lamb, who also has
another son, Andy, age 22.
Once Matt had recovered, Lamb joined the Community
Leadership Team in 2005, now more familiar with
Akron Children’s and with a new appreciation for the
services it offers.
Her sons have also gotten involved with some of
the center’s activities, particularly the Holiday Elves
program. Matt, now 21, and Andy both help make
deliveries to patient families, getting great joy in
spreading holiday cheer and handing out stockings
to the children, which always seem to have just the
right toy or treat.
“Having an opportunity to interact with the families
and get a better understanding of what we can do to
help is the most rewarding part of being a volunteer,”
said Lamb. “Dr. Friebert and her staff are incredibly
committed to meeting the needs of the community
and the families they serve. I’m honored to be able to
support that, so they can focus on this important work.”
Meg lives in Bath Township, where she is also active
in the Bath Church. She’s on the Dean’s Advisory
Board at Northeast Ohio Medical University’s College
of Pharmacy, serving as a preceptor for pharmacy
students. She’s also a member of the Summit Vaccine
Coalition and Partners for Safety, a fall prevention
initiative for seniors.
15
of Ainsley’s illness, the Haslinger Family Pediatric
Palliative Care Center was there.
“They really served as our go-between and our voice
with the rest of the staff,” said Jennifer. (Besides 13
months in the NICU, Ainsley also spent three months
in the Pediatric Intensive Care Unit at Children’s.)
Jennifer and Mark Knepper with daughters Olivia and Adelle.
“It was very overwhelming and Marlene (Marlene
Hardy-Gomez, a pediatric nurse practitioner on the
palliative care team) was really good at anticipating
what we needed, even before we knew it,” said
Jennifer.
Meet the Kneppers
Palliative care staff also helped the Kneppers sort
through the vast medical information they were
receiving throughout their daughter’s care.
Like many young couples, Mark and Jennifer
Knepper of Streetsboro looked forward to starting a
family. When their first child, Olivia, was about 1
year old, they found out Jennifer was pregnant with
identical twin girls. This pregnancy, however, did not
go smoothly.
“Ainsley was handled flawlessly in the hospital.
When the time came, the palliative care team helped
her pass peacefully,” said Jennifer. “They were so
caring and proactive, and did everything possible to
help us.”
Jennifer developed pre-eclampsia, a potentially
dangerous complication of pregnancy, and was
hospitalized at 31 weeks. A Caesarean section was
scheduled at 32 weeks, yet the day before, Jennifer
and Mark lost one of the twins to a fetomaternal
hemorrhage, a condition where blood from the fetus
leaks into the mother’s bloodstream.
Because of the risk to the surviving twin, she had
to be delivered right away. Ainsley was born on
December 29, 2010, and immediately transported to
Akron Children’s Hospital’s Neonatal Intensive Care
Unit (NICU). The biggest issue facing the preemie
was her under-developed lungs.
Although she started out strong, there would be
set-backs as Ainsley’s breathing continued to
deteriorate, said Jennifer. Eventually she had to
have a tracheotomy and was dependent on a
ventilator to help her breathe. She also had a
feeding tube.
As they were preparing to say goodbye to one child,
the Kneppers were also preparing for the birth of
another. When Ainsley was 9 months old, they
found out that Jennifer was pregnant. Throughout
the pregnancy, the palliative care staff made sure
Jennifer was comfortable while she was at Ainsley’s
bedside every day.
Ainsley passed away on May 12, 2012 and two
weeks later on May 29, Adelle was born. It was
a bittersweet time for the Kneppers as they said
goodbye to one daughter and welcomed another.
“At that point, we were in survival mode and focused
on moving forward,” said Jennifer.
The Kneppers no longer make daily visits to Children’s,
and have settled into a new family routine with their
young daughters, who, like Ainsley, have brought
them so much joy. Despite everything they have
been through, they have many good memories of
the days when Ainsley was doing well – smiling,
laughing and happy in spite of being so sick.
For the Kneppers, the next 16 months would be
spent at Akron Children’s as they helped their baby
fight to survive. Throughout the ups and downs
16
Education
Impacting the Delivery of
Palliative Care
• Selected as a Palliative Care Leadership Center
(PCLC) by the Center to Advance Palliative Care
(CAPC) in 2008, the Haslinger Center trains and
mentors teams from institutions around the country
that are starting or enhancing their own pediatric
palliative care programs. In 2011 and 2012, we
trained 19 teams (more than 100 people).
• Our Pediatric Palliative Care Fellowship Training
Program received certification from the Accreditation
Council for Graduate Medical Education (ACGME)
in 2009, and was reaccredited for 10 years after
a site visit in 2012. All of our graduated fellows who
have taken the board exam in Hospice and Palliative
Medicine have passed and are currently practicing
in the field. Palliative care fellows trained in
2011-2012 include:
- Kristin Meade, MD and Blaine Pitts, MD
2010-2011
- Britni Lookabaugh, MD and Dianna Yip, DO
2011-2012
- Brooke Johnston, MD and Conrad Williams, MD
2012-2013
other hospital staff, community members, patients
and parents. Continuing education credit is offered
to nurses, physicians, psychologists and social
workers, with a certificate of completion offered for
other allied health professionals.
• The quarterly Lunch ‘N Learn Series continues to be
well-attended by community agencies and hospice
organizations. Many of these organizations do not
frequently see children with life-threatening or chronic
conditions, so our education can help them provide
better care for our patients in their own communities.
In 2011 and 2012, topics included care coordination
for children with special needs, feeding and nutrition
for children with special needs, pediatric symptom
management, perinatal palliative care, complementary
and alternative therapies, and boundaries.
For the most up-to-date schedule and topics for these
educational programs, check our event listing at
akronchildrens.org/palliativecare.
Educating our Medical Community
• The Haslinger Center continues to offer elective
rotations for medical students from Northeast Ohio
Medical University (NEOMED) and for Akron
Children’s Hospital residents, as well as residents
and students from institutions that do not have
well-developed pediatric palliative care programs.
• We host nursing and social work students, physicians
and other healthcare professionals who want to learn
more about pediatric palliative care. Learners participate
in consultations and family meetings, and receive
overall exposure to the goals, philosophies and
practice of pediatric palliative care.
• The monthly Pediatric Palliative Care Curriculum
series continues to be well-received by Akron
Children’s staff and the community, and is a required
lecture for the hospital’s residents. Topics include
communication, treatment of pain and other symptoms,
boundary issues, ethics, spirituality, grief and
bereavement. Presenters include palliative care and
Emani Johnson
17
Education
Collaborating with the
Faith Community
• The Palette of Faith Coalition
was established in 2009 to
share ideas among the faith
community regarding how to
better serve families
facing serious illness. As part of this mission, an
annual conference is held. In 2011, Summa Health
System hosted “Honoring the Stories: Enriching
Meaning at End of Life.” In 2012, Akron Children’s
hosted “Sacred Moments: The Role of Spirituality
in Sustaining Patients, Families and Their
Professional Caregivers.”
Presenting to National and
International Audiences
Middle East Cancer Consortium Advanced Pain
Medicine & Palliative Care for Children Workshop
for Professionals in Pediatric Hematology-Oncology,
Larnaca, Cyprus
• Sarah Friebert
- Advanced Communication and Decision-making
in Pediatric Hematology-Oncology
- Ethical and Legal Challenges in Pediatric
Hematology-Oncology
- Team Collaboration and Effectiveness in Pediatric
Hematology-Oncology
- Managing Distressing Symptoms: Fatigue,
Psychosocial & Psychiatric Symptoms
International Symposium on Pediatric Palliative Care,
Seoul, South Korea
• Sarah Friebert
- Healing the Total Pain of Children and Adolescents:
The Global Pediatric Palliative Care Movement
- Pediatric Palliative Care in the USA
- A Doctor’s Perspective on Pediatric Palliative Care
in the USA
• Marlene Hardy-Gomez
- The Role of the Nurse Practitioner in Pediatric
Palliative Care
- Being an Advanced Practice Nurse in the U.S.
- A Nurse Practitioner’s Perspectives on Pediatric
Palliative Care in the USA
15th Annual Update on Pediatric and Congenital
Cardiovascular Disease: A Holistic Approach –
Bringing Interdisciplinary Evidence-Based Practice to
the Patient, Scottsdale, AZ
• Marlene Hardy-Gomez
- The Newest “Odd Couple:” The Heart Center
and the Pediatric Palliative Care Team at Akron
Children’s Hospital: A Comprehensive and
Transdisciplinary Team Approach to Complex
Congenital Heart Disease
American Academy of Child and Adolescent
Psychiatry and Canadian Academy of Child and
Adolescent Psychiatry Joint Annual Meeting,
Toronto, ON
• Sarah Friebert
- If You Build it Right, They Will Come: Pediatric
Palliative Care Delivery Models
- Teaching Palliative Care in an Oncology Setting
- Preparation for Imminent Death
- Sedation to Unconsciousness for Refractory Distress
- Developing Strategies of Change for Palliative Care
in Your Institution
- Small Group Facilitator: Professional Care for
Professionals; Family-Centered Care; Psychosocial/
Spiritual Care; Procedural Pain Management
Workshop
Nevaeh Mann
18
Center to Advance Palliative Care National Seminar,
San Diego, CA
• Margaret Farrar-Laco
- Time: Why Does it Take So Many People to Take
Care of These Patients?
- Pediatric Palliative Care and the Adult Community
Provider
- Structure and Function of the Pediatric Palliative
Care Team
First Pediatric Palliative Care Symposium, Kingdom
of Saudi Arabia, Jeddah
Lucas Smolinski and his service dog, Clarabelle.
• Sarah Friebert
- Referral Criteria to Pediatric Palliative Care
- Managing Anxiety and Depression in Pediatrics
- Ethical Principles and Decision-making in Pediatric
Palliative Care
- Development of Quality Indicators in Pediatric
Palliative Care
New York University, Langone Medical Center
Pediatric Grand Rounds, New York, NY
• Sarah Friebert
- State of the Art and Science in Pediatric Palliative
Care: Arrive Early and Stay Late
Riley Children’s Hospital, Pediatric Grand Rounds,
Indianapolis, IN
Cooper Regional Hospital Pediatric Grand Rounds,
Camden, NJ
• Sarah Friebert
• Sarah Friebert
Society of Hospital Medicine Annual Conference
(HM12), San Diego, CA
OPPEN (Ohio Pediatric Palliative and End-of-Life Care
Network) Fall Educational Seminar, Dublin, OH
• Sarah Friebert
• Sarah Friebert
- Management of Suffering During Discontinuation
of Medically Provided Nutrition and Hydration
Hospice of the Valley, Youngstown, OH
University of Maryland Medical Center Pediatric
Grand Rounds, Baltimore, MD
• Margaret Farrar-Laco
- Pediatric Pain and Symptom Management
- Introduction to Pediatric Palliative Care
MetroHealth Medical Center Pediatric Grand Rounds,
Cleveland, OH
• Sarah Friebert
• Sarah Friebert
- Mission Possible: Integrating Pediatric Palliative
Care into the Subspecialty Care of Children with
Serious Illness
Children’s of Alabama Pediatric Grand Rounds,
University of Alabama at Birmingham, AL
• Sarah Friebert
- A Zero-Tolerance Policy for Symptoms and Suffering
in Children and Families: Together, We Can!
19
Education
Cleveland Clinic Foundation Pediatric Grand Rounds,
Cleveland, OH
• Sarah Friebert
Georgetown University Hospital, Washington, DC
• Sarah Friebert
Boston Children’s Hospital Stephen E. and Catherine
Pappas Annual Grand Rounds Lecture in Pediatric
Palliative Care, Boston, MA
• Sarah Friebert
- Moral Distress in the Care of Children with
Advanced Neurological Illness
OSF Annual Supportive Care Education Day, OSF
Saint Francis Medical Center and Children’s Hospital
of Illinois, Peoria, IL
• Sarah Friebert
- Spirituality in the Dying Child/Child with
Terminal Illness
District of Columbia Pediatric Palliative Care
Collaboration’s Carlos F. Gomez Quality of Life for
the Children Conference, Washington, DC
• Sarah Friebert
- The Child with Cancer: Oncologic and Pediatric
Palliative Care Approach
- The Interdisciplinary Team
21st Annual Good Grief Conference, “Innovations
in Spiritual Technologies: Voices of Compassionate
Care,” Virginia Commonwealth University/Medical
College of Virginia, Richmond, VA
• Sarah Friebert and M. Karen Ballard
- Compassionate Practice in Pediatric Palliative
Care: A Workshop
• Sarah Friebert
- Leaving the Nest: Moving Your Pediatric Palliative
Care Program Beyond the Inpatient Setting
- Yes We Can: Seamless Integration of Palliative
Care in the Pediatric Intensive Care Unit
National Hospice and Palliative Care Organization
12th Clinical Team Conference, San Diego, CA
Management and Leadership Conference, National
Harbor, MD
• Sarah Friebert
- Care for Children: Section 2302 of the Patient
Protection and Affordable Care Act
• Sarah Friebert
- Pediatric Standards to Improve Organizational
Quality Across the Lifespan
Greater Illinois Pediatric Palliative Care Collaboration
Regional Conference, Springfield, IL
• Sarah Friebert and Margaret Farrar-Laco
- Building for the Long Run: Care and Feeding of
the Pediatric Interdisciplinary Team
Baptist Health South Florida Pediatric Grand Rounds,
Miami, FL
• Sarah Friebert
- Care for Children: Section 2302 of the Patient
Protection and Affordable Care Act
• Sarah Friebert
- Pediatric Oncology and Palliative Care: Time for
the Twain to Meet
Virginia Commonwealth University/Medical College of
Virginia Pediatric Grand Rounds, Richmond, VA
Nationwide Children’s Hospital Pediatric Grand
Rounds, Columbus, OH
• Sarah Friebert
- Management of Distressing Symptoms in Pediatric
Palliative Care
- Yes We Can: Seamless Integration of Palliative
Care in the Pediatric Intensive Care Unit
20
Nationwide Children’s Hospital, Columbus, OH
- A Study of the Collective Soul of a Pediatric Palliative
Care Team and Interventions to Support the Soul
Association of Professional Chaplains 2011 Annual
Conference, Dallas, TX
- A Study of the Collective Soul of a Pediatric
Palliative Care Team and Interventions to Support
the Soul
Bears made for our families by Peggy Vreuls and friends.
Northeast Ohio Medical University Community Health
Sciences Grand Rounds, Rootstown, OH
• Sarah Friebert
- Pediatric Palliative Care: Why It Should Matter To
You: An Unrecognized Global Health Initiative
American Society of Pediatric Hematology-Oncology
24th Annual Meeting, Baltimore, MD
• Sarah Friebert
- Closing the Gap on Palliative Care
Children’s Memorial Hospital, Chicago, IL
• Sarah Friebert
- Pediatric Palliative Care: State of the Art and Science
American Academy of Hospice and Palliative Medicine
Annual Assembly, Vancouver, BC
• Sarah Friebert
- Figuring Developmental Disability into the Calculus
of Benefits and Burdens of Life-Prolonging
Interventions for Children
Center to Advance Palliative Care Audioconference
• Sarah Friebert
- Creating Pediatric Palliative Care Programs in Your
Community
- Top Strategies for Early Integration of Palliative
Care for Children with Cancer
American Society of Pediatric Hematology-Oncology
(ASPHO) Audioconference
• Sarah Friebert
- Pediatric Palliative Care in Sickle Cell Disease
Midwest Care Alliance and HospiScript Services
Audioconference
• Sarah Friebert
- Pediatric Palliative Care
Audioconference
• Sarah Friebert
- Pediatric Palliative Care: Putting Standards into
Practice
- From Competencies to Curriculum: The National
Collaborative Project on Defining the Pediatric
Palliative Care Competencies and Developing a
Shared Curriculum
21
“Social worker Denise Powers Fabian is amazing,”
said Beth. “If questions came up, we’d call Denise
first. She always came through for us.”
Lucas still has a VP shunt to relieve fluid and
swelling on the brain and a feeding tube, but since
May 2013, he no longer has a tracheotomy and is
breathing on his own. Although he’s home with his
family, which also includes his 8-year-old brother,
Aiden, Lucas still requires overnight nursing care
through Children’s Home Care Group.
Denise helped the family apply for coverage for
Lucas’ medical care through Medicaid and the
Bureau for Children with Medical Handicaps.
Palliative care has also assisted the family with
other financial concerns, since Beth had to quit her
job at a local hospital.
Beth and Lucas Ransom.
Meet Lucas
From the moment he was born, Lucas Ransom was
in a fight for his life. Although he arrived one month
early in January 2010, with a cleft palate that made
feeding difficult, he had several other serious problems
unrelated to his prematurity that made his condition
critical. This included a type of bacterial infection
known as Group B strep (GBS), meningitis, sepsis
and a build-up of fluid on the brain or hydrocephalus.
“As a man, it’s hard to ask for help,” said Brent,
who’s self-employed as a web developer/designer.
“But we are so grateful for the financial assistance
that palliative care has provided.”
“They’ve been a huge help behind the scenes, helping
us apply for programs and just keeping us informed
about new resources that are available,” added Beth.
Lucas is now 3 and attends an integrated preschool
three days a week with other children who may have
special needs, as well as those who do not.
His parents are thrilled that Lucas is able to be with
other kids his age and is making friends.
Initially he spent time in the neonatal intensive care
unit at the hospital where he was born, but when
his condition worsened, he was transferred to the
Pediatric Intensive Care Unit at Akron Children’s
Hospital.
Shortly after this, his parents, Beth and Brent of
North Canton, met the team in the Haslinger Family
Pediatric Palliative Care Center. The palliative care
team offered moral and emotional support to the
Ransoms, especially through the ups and downs of
Lucas’ condition.
“We almost lost him three different times,” said Brent.
Along with the emotional rollercoaster of having a
critically ill child, the Ransoms also had practical
concerns and questions.
22
Brent and Lucas Ransom.
Special Projects
Foundation for Hospices in
Sub-Saharan Africa (FHSSA)
Beth, Brent and Lucas Ransom.
“It’s like a dream come true,” said Beth.
Because the preschool was not used to having a child who
is medically fragile, Denise met with his teachers to review
Lucas’ Individualized Education Program (IEP).
Since starting preschool in January 2013, Lucas has made
great strides. He’s starting to say words and has taught his
classmates and teachers how to sign, which is his primary
method of communicating.
Along with preschool, Lucas attends weekly speech, physical
and occupational therapy sessions at Akron Children’s.
Previously in a wheelchair, he’s now able to use a walker,
often under the watchful eye of Aiden who’s very protective
of his little brother.
Through Akron Children’s, the Ransoms have met other
families of children with special needs, who all recently
attended an event together at the Akron Zoo.
“It was so nice to be in a situation where we can all be
comfortable and nobody stares or gawks at your child,”
said Beth.
With each new word or skill that Lucas learns, his parents
marvel at just how far he has come.
The Haslinger Center has recently partnered
with a pediatric palliative care program in
Kenya, Africa, through the Foundation for
Hospices in Sub-Saharan Africa (FHSSA),
a program of the National Hospice and
Palliative Care Organization (NHPCO).
U.S. hospice and palliative care programs
commit to supporting the African programs
by sharing knowledge and raising funds,
which can make a big difference in a place
with very few resources. We’ve been able
to have a few calls via Skype with the
pediatric palliative care staff at Garissa
Provincial General Hospital in Kenya and
plan to communicate with them on a
monthly basis. The hope is that eventually
members of our staff will be able to travel
to Africa, and members of their staff will be
able to come here. We are grateful to our
Community Leadership Team for committing
to raise funds for this worthwhile project.
For more information about the FHSSA
program, visit www.fhssa.org.
Documentary: Portraits of
Life, Love & Legacy Through
Pediatric Palliative Care
In 2012, in collaboration with Northeast
Ohio Medical University and a grant from
the Akron Community Foundation, we
created Portraits of Life, Love and Legacy
Through Pediatric Palliative Care. This
documentary about our program features
the stories of seven of our families who
discuss their close partnerships with our team
and how they found love, joy and purpose
through the lives of their special children.
Visit www.neomed.edu/educationalmedia
to view a trailer and for ordering information.
“He’s a miracle child,” said Brent.
23
Financial Support
Palliative Care Funds
The following is a list of funds
that support the Haslinger Family
Pediatric Palliative Care Center.
The funds allow donors to
better choose and direct how
their money is used. Your gift to
any of the funds listed will go a
long way toward enhancing the
lives of children and families.
If you are interested in making
a donation, please use the
enclosed postage-paid envelope
and indicate if there is a specific
fund you would like to support,
or contact the Akron Children’s
Hospital Foundation at
330-543-8340. Thank you!
The Palliative Care General Fund
provides financial support for the
immediate needs of the center,
such as equipment and supplies
for patient use, educational
needs, or other expenses related
to the operation of the center.
The Cushwa Family Pediatric
Palliative Care Fund was
established by Mr. and Mrs.
William Cushwa to support
program staff who provide
unreimbursed care, such as our
psychologist, dietitian, child life
specialist and massage therapist.
24
The Pediatric Palliative Care Gift
Card Fund was recently renamed
the Courage for Carina Gift Card
Fund in honor of Carina Britz, a
palliative care patient who died
in 2009. It was established by
Mr. and Mrs. William Cushwa to
purchase gift cards for patients to
buy items such as groceries,
clothing, gasoline and other
necessities.
The Austin Michael Davis
Memorial Endowment Fund was
created by donations received in
memory of Austin Michael Davis
who died in 1992 at age 2 1/2
from Hemolytic Uremic Syndrome.
It funds parent and family support
services.
The River of Life Fund assists
caregivers by relieving financial
burdens when other resources
have been exhausted or are
unavailable, particularly for
housing, utilities, groceries,
transportation, medical and
burial expenses.
Sarah Elizabeth Friebert, MD
Leadership Chair in Pediatric
Palliative Care Fund supports
the director of the Haslinger
Center and was started by a
gift from the Sutkowski Foundation.
This is the first-ever pediatric
palliative care endowed chair
position in the country.
The Pediatric Palliative Care
Fellowship Fund supports
programs and activities to
enhance the education of
pediatric palliative care fellows
trained at Akron Children’s
Hospital.
The Colin James Carr Fund
supports community bereavement
services and programs at Akron
Children’s Hospital. It was
established in 2001 by Adam
and Valerie Carr in memory of
their son.
Lauren Ellen Gartner, Forever
in Our Hearts, Expressive
Therapy Fund supports the
Expressive Therapy Center at
Akron Children’s Hospital. The
center provides space where
patients and family members can
participate in music, art, dance,
photography and other forms of
creative expression.
The Stan and Roberta Marks
Fund for Music Therapy supports
staffing, supplies, instruments,
programming, education and
other designated projects needed
for the music therapy program.
The Manny Rodriguez Patient
Safety Education Fund supports
education and training of staff and
families related to patient safety,
as well as the importance of
pediatric palliative care in the
lives of children and families.
Donor Angels
January 1, 2011 through December 31, 2012
Dr. and Mrs. Drew K.
Abramovich
Mr. Bruce Agneberg
Akron Children’s Hospital
Employee Foundation Council
Genetics Department
Medical Staff
Pediatrics Green
Akron Civic Theatre
Akron Community Foundation
Akron General Medical Center
Akron Glass Tinting
Akron Racers Professional
Softball Team
Mrs. Virginia and Mr. William E.
Albanese
Album Epoca USA, LLC
Mr. and Mrs. Michael D. Allega
Beth and Ham Amer
American Centrifuge
Manufacturing, LLC
American International Group,
Inc. Matching Grants Program
Ms. Julie E. Amsden
Mrs. Kathy A. Andrea
Rennick and Dee Andreoli
Andrew Jordan Photography
Mr. and Mrs. Greg Anthony
Mr. and Mrs. Charles Antibus
Mr. and Mrs. Spiros Arfaras
Association of Ohio Music
Therapists
Mr. and Mrs. Arthur E. Bailey
Bailey’s Quality Plumbing &
Heating, LLC
Mr. and Mrs. Michael C. Bair
Ms. Beverly Baker
Ms. Hallia Baker
Dr. Kimberly N. Baker
Ms. Regina J. Bandera
Mr. and Mrs. Jacques B. Barrett
Dr. and Mrs. Anthony P.
Bartholomew
Believe in Tomorrow
Mr. and Mrs. Justin M. Benko
Dr. and Mrs. Arthur S. Benson
Ms. Joyce Berkenstock
Mr. and Mrs. Joseph Bernel
Mr. and Mrs. James A.
Berresford
Ms. Camille M. Berrodin
Mrs. Phyllis C. Berry
Beverly’s Invitations & Stationery
Dr. and Mrs. Michael T. Bigham
Mr. and Mrs. Mark J. Blakely
Ms. Nancy Bodnar
Mr. Roger D. Bodosi
Mr. Nathaniel Bowler
Boy Scout Troop 933
Mr. and Mrs. Dan Boyle
Ms. Katherine Brandt
Ms. Madeleine Breen
Mr. and Mrs. David L. Brennan
Bridgestone Americas Trust Fund
Mrs. Ann Britz
Mr. and Mrs. James Broers
Mrs. Ann Marie Brown, CNP and
Mr. Douglas Brown
Mr. and Mrs. Charles A. Brown
Mrs. LaRee J. Brown
Mr. and Mrs. Russell Brown
Ms. Julie Bruno
Mr. and Mrs. John A. Bryson
Mr. and Mrs. Brendan C.
Buescher
Mrs. Eileen E. Burg
Ms. Barbara Burger
Mr. and Mrs. Jeffrey L. Burman
Mr. and Mrs. James R. Bussman
Mr. and Mrs. David Butler
Ms. Betty Caetta
Ms. Marilyn Calciano
Mr. and Mrs. Bruce J. Campbell
Mr. and Mrs. Jay E. Campbell
Mr. and Mrs. Joseph J. Campo
Mr. and Mrs. Joseph M. Campo
Ms. Patti Cantwell
Mr. and Mrs. Rocco L. Caponi
Mr. and Mrs. James A. Cargle
Carl & Sadie Shaheen Charitable
Foundation
Debbie and Joe Carpenter
Mr. Adam Elliot Carr and
Mrs. Valerie Wax Carr
Ms. Nancy A. Carst
Mr. and Mrs. Steven M. Carter
Ms. Roxann Case
Mr. Chuck Catalano
Mr. and Mrs. David J. Celik
Mr. and Mrs. Michael L. Cercell
Ms. Lyn Ceronsky
Charles Schwab Corporation
Foundation
Mr. and Mrs. Thomas S.K. Chi
Norman and Jean Christopher
CHUBB & Son
Mr. Lance Churchman
Mr. Larry K. Churchman
Cindy & John T. Petures, Jr.
Family Fund of Akron
Community Foundation
Ms. Elizabeth A. Clark
Mr. and Mrs. John C. Clark
Mark and Cathy Clark
Ms. Janette Clements
Mr. and Mrs. Douglas I. Cole, Jr.
Drs. Georgette and Stavros
Constantinou
Mr. and Mrs. David Cook
Mr. and Mrs. Kevin M. Cook
Mr. and Mrs. Gregory J. Cordray
Ms. Janet F. Cornelius
Courage for Carina & Company
Covelli Enterprises, Inc.
Mr. and Mrs. Scott Cox
Thomas R. and Mary Lynn
Crowley
Mr. Dennis Cukon
Mr. Ron Culberson
Mr. and Mrs. Jonathan P. Culp, Jr.
Mr. and Mrs. Robert L. Culp, Jr.
Ms. Michele Cummings
Mr. and Mrs. Howard M.
Cunningham
Mr. and Mrs. William W.
Cushwa, Jr.
Ms. Marlene M. D’Amura
Ms. Susan Daum and Ms. Sandy
Gleason
Mr. and Mrs. Mark C. Davey
Mr. and Mrs. Dennis D.
Davidson
Chrissy Davis
Mr. and Mrs. Harry Davis
Mr. and Mrs. Richard Davis
Mr. Terence F. Deane
Mrs. Terence F. Deane
Ms. Dianne L. DeBord
Mr. and Mrs. Eric T. Deighton
Mr. and Mrs. Thomas J.
Deighton
Mr. Doug Delahanty
Mr. Robert Demboski
Rev. Douglas B. Denton
Dermatologic Surgery Center of
Northeast Ohio, Inc.
Mrs. Susan DiCosimo and
Mr. Michael E. Snyder
Mr. and Mrs. Edward A.
DiCresce
Mr. and Mrs. Kevin Dieter
DiFeo & Sons Poultry
Mr. Anthony D. Dilucente
Master Xavier Dirker
Mr. and Mrs. Jeffery J. DiSandro
Ms. Deborah S. Dodd
Mr. and Mrs. Mark A. Dodez
Mr. and Mrs. Michael J.
Donahue, Jr.
Mr. and Mrs. Thomas C. Dormo
Ms. Betty Dowd
Ms. Cynthia K. Duncan
Tom Dye
Mr. and Mrs. James S. Earich
Ms. Carol A. Eckroate
Mr. Anthony M. Elavsky
Mr. and Mrs. Chip Elavsky
Mr. and Mrs. Frank V. Elavsky
Jason and Allison Ewing
Continued on next page
The Haslinger Family’s Generous Support
The Haslinger Family Pediatric Palliative Care Center Fund was created in 2002
with a generous $4 million commitment in support of the center’s operations. In
2009, the Haslinger family generously pledged to continue their support of the
Haslinger Center and an endowed chair in Pediatric Palliative Care through a
matching grant. A challenge was issued: to raise $200,000 annually for five years,
with each dollar matched by the Haslingers, up to $1 million.
Sandra Haslinger
Through the generosity of donors, over $900,000 has been raised toward the
endowed chair since 2009. Including the generous grant match, the grand total
raised stands at more than $1.7 million.
25
Financial Support
Ed and Denise Fabian
Dr. Ibrahim S. Farid and
Dr. Rosemary R.G. Farag
Ms. Beth Farnstrom
Mr. Christopher Laco and Mrs.
Margaret E. Farrar-Laco, CNP
Mr. John Faust
Mr. Lawrence Fenton
Fidelity Charitable Gift Fund
FirstEnergy Corporation
Mr. Jon Fiume
Ms. Bridget R. Flowers
Mr. and Mrs. Gregory A. Folatko
Mr. and Mrs. John C. Fondran
Dr. Michael Forbes
Mr. and Mrs. David G. Forgach
Ms. Judith L. Fowler
Dr. and Mrs. Monte E. Fox
Mr. and Mrs. William G. Frantz
Fraternal Order of Police 88
Dr. Sarah Friebert
Steve and Naomi Friebert
Stuart and Diane Friebert
Mr. and Mrs. Jason A. Fried
Friends of Children’s Hospital
Mr. Harold H. Gaehle, Jr.
Ms. Catherine M. Gaeta
Ms. Eleanor Gaeta
Mr. Brooks Collins Gaines
Ms. Carol Ganzel
Ms. Emily Ganzel
Gap Foundation Gift Match
Program
Mr. and Mrs. David A. Gardner
Mr. and Mrs. Carl Gartner
Ms. Nancy X. Gartner
Mr. and Mrs. Daniel L. Gentile
Giant Eagle 4060
Mr. Joshua Gippin
Ms. Michelle Gippin
The Honorable and Mrs. Robert
Gippin
Girl Scout Troop 90806 from
Brimfield
Girl Scout Troop 1420 from
Wadsworth
Mr. and Mrs. Dennis Gonano
Dr. and Mrs. Terry Gordon
Mr. and Mrs. Robert Gottschick, Jr.
Mr. Joseph Graham
Ms. Theresa Graziani
Mr. James R. Griggy
Dr. and Mrs. Jordan P.
Grossman
Mr. and Mrs. Jeremy M. Gursky
Mr. and Mrs. Jeremy D. Ha
Ms. Eileen M. Habunek
Drs. Timothy L. and
Brenda L. Hagen
Mr. and Mrs. William G. Hager
Ms. Joyce K. Hamaker
Mr. Randy M. Hamblin
26
Mr. and Mrs. Carl M. Hammons
Ms. Jean Hansen
Ms. Lenora Hanuschock
Ms. Rita Hanuschock
Mr. and Mrs. Kenneth N. Harlin
Mr. and Mrs. Robert A. Harris
Ms. Latrice D. Harris-Hazell
Harwick Standard Distribution
Corporation
Ms. Jennifer Sue Haslinger and
Mr. Jeff Johnson
Ms. Melissa A. Haslinger
Haslinger Family Foundation
Dr. Julie Hauer
Mr. and Mrs. Michael J. Haught
Helen Brach Foundation
Hernandez Construction
Services, Inc.
Mr. and Mrs. Gary A. HeslopBaker
Mr. Michael L. Hillman
Mr. and Mrs. Mitchell E. Hirsch
Dr. Cassandra Hirsh and
Mr. Brian Harrell
Ms. Rae Hoelzer
Ms. Carolyn B. Hofmann
Mr. and Mrs. Thomas G.
Hofmann
Mr. and Mrs. Steven R.
Holdsworth
Mr. and Mrs. Willard T. Holland
Mr. and Mrs. Brian J.
Hollingsworth
Mr. and Mrs. Bruce
Hollingsworth
Adam and Pam Holtz
Mr. and Mrs. Barry B. Holtzer
Tami Hood
Mr. and Mrs. William M.
Hopkins
Mr. and Mrs. Steven J. Hopp
Drs. Jeffrey and Patricia Hord
Horizon Hospice
Hospice of the Valley
Hospice of the Western Reserve,
Inc.
Mr. and Mrs. Otis A. Hower
Susan Howson
Ms. Rebecca S. Huff
Ms. Connie W. Humble and
Mr. Bill Delagrange
Mr. and Mrs. Paul A. Hummel
Hummel Funeral Homes
Mr. and Mrs. Jeffrey H. Hunt
Mr. and Mrs. Joseph F.
Hutchinson, Jr.
Mr. and Mrs. John N.
Innamorato
Dr. Sharon R. Irwin
J.M. Smucker Company
Jackson Band Boosters
Jean P. Wade Foundation
Jevs Human Services Ohio FMS
John S. and James L. Knight
Foundation
Mr. and Mrs. Donn Johnson
Mr. and Mrs. David C. Johnston
Joy Mining Machinery
Ms. Sandra A. Kalenterides
Mr. and Mrs. Elias J. Karam
Ms. Nadine Kasmar
Ms. Elizabeth Katavich
Mr. George J. Katzakis
Mr. and Mrs. Craig Kearns
Drs. Costas and Sarah Kefalas
Mr. and Mrs. William Kelleher
Drs. Jeff and Ellen Kempf
Mr. and Mrs. David R. Kimberly
Kiwanis Club of Belden Village
KKG Akron Alumnae Association
Ms. Inga Klein
Jennifer Knepper
Mr. and Mrs. Lloyd F. Knudsen
Mr. and Mrs. W. Dale Koblenzer
Mr. and Mrs. Mark L. Kohler
Mr. and Mrs. Robert G.
Konstand
Mr. and Mrs. Kenneth Koontz
Kovatch Castings
Mr. Larry Kowicki
Mr. and Mrs. William J. Koza
Mr. and Mrs. Douglas Krapf
Mr. William P. Krause
Mr. and Mrs. Stanley M.
Krusinski
Drs. Steven and Carolyn Kuerbitz
Mr. and Mrs. Lester D. Kurtz
Mr. and Mrs. James Lalumandier
Tom and Meg Lamb
Mr. William P. Landers
Mr. and Mrs. Butch Landis
Mr. and Mrs. Stephen A. Landry
Laura R. and Lucian Q. Moffitt
Foundation
Mr. Steven C. Lazarides
Dr. Amy F. Lee
Ms. Valoree Lee
Ms. Rachel Levi
Lexus of Akron Canton
Lexus Pursuit of Potential
Dr. Stephen Liben
Mr. and Mrs. Scott A. Life
Linton & Hirshman, LLC
Mr. and Mrs. Frederick C.
Linxweiler, Jr.
Mr. and Mrs. Michael Livesay
Lloyd L. & Louise K. Smith
Memorial Foundation
Sue Locke
Mr. and Mrs. William B.
Lockwood
Russ and Tonya Long
Mr. and Mrs. David A. Looney
Lubrizol Foundation
Mr. and Mrs. Joseph D. Lucci, Jr.
Mr. and Mrs. John Lukez
Mr. and Mrs. Charles L.
Lunghofer
Mr. and Mrs. Gerald A. Lutkus
Mr. Jeff Lycan
Mr. and Mrs. Shawn M. Lyden
Mr. and Mrs. Martin L. Lyman
Ms. Teri Vreuls Maerki
Manchester United Methodist
Church
Mann Architects
Margaret Clark Morgan
Foundation
Marketing Essentials
International
Mr. and Mrs. Anthony F. Marko
Roberta and Stan Marks
Mr. and Mrs. Joseph Massey
Mr. and Mrs. Daniel J.
Mastroianni
Mr. John Mastrojohn, III
Mr. and Mrs. Benjamin Mathews
Mr. and Mrs. James D. Maxen
Mr. and Mrs. Philip H. Maynard
Drs. John and Margaret McBride
Mr. and Mrs. Brian S. McCaulley
Spike and Lindsay McCorcle
Ms. Edna McCort
Greg and Jackie McDermott
Mr. and Mrs. Tommy McDonald
Mr. and Mrs. Leo McGuinness
Mr. and Mrs. David E. McIlvaine
Mr. and Mrs. Thomas McKenna
Mr. Robert McKimm
Mr. and Mrs. Richard McPeek
MCV Foundation
MDS Foods, Inc.
Dr. Kristin Meade
Mr. Glen Medellin
Laurie Mellion
Mellion Orthodontics
Ms. Iris J. Meltzer
Ms. Christine Meneer
Ms. Julie Mertz
Mr. and Mrs. John Michael
Mr. Scott J. Michaels
Mr. and Mrs. Frederick S. Miller
Mr. Galen Miller
Ms. Ashley Minck
Ms. Virginia Mitchell
Mr. and Mrs. Vincent L.
Monahan
Mr. and Mrs. Sean A. Monigold
Mr. and Mrs. Mark J.
Montgomery
Ms. Pam Montisano
Marie Moore
Ms. Kathy Moorhouse
Mrs. Josephine A. Moran
Ms. Kristine R. Moran
Carol Morano
Mr. and Mrs. Martin F. Moritz
Ms. Stephanie Morley
Ms. Linda M. Murillo
Ms. Bonita Myers
Ms. Narketta Myles
Mr. and Mrs. Larry D. Nance
Mr. Samer N. Narouze
Mr. and Mrs. John A. Naska
Mr. and Mrs. Robert L. Nathan
Neurology & Neuroscience
Associates, Inc.
Mr. and Mrs. Gregory R. Nichols
and Family
Mr. and Mrs. James Nolte
Mr. Christopher M. Nonno and
Ms. Kara Joy Alvey
Ms. Emily Norman
Northeast Ohio Medical
University
Dr. and Mrs. Keith G. Novak
Mr. and Mrs. Kurt S. Nygaard
Ohio Farmers Insurance Co.
Mr. and Mrs. Rory H. O’Neil
Mr. Dominic R. Oravec
Mr. and Mrs. John O’Toole
Mr. and Mrs. John W. Palazzo
Mary Beth Palmer
Mr. and Mrs. Ralph J. Palmisano
Ms. Mary V. Parasilite
Mr. and Mrs. Joseph Parisi
Mr. and Mrs. Joseph S. Parisi
Ms. Dyana R. Parker
Ms. Elizabeth R. Parker
Dr. and Mrs. Michael G. Parker
Mr. Howard Parr
Ms. Mary G. Parr
Mrs. Janise B. Parry
Dr. Robert L. Parry and Mrs.
Jennifer L. Parry
Mr. and Mrs. William C. Parry
Ms. Darlene M. Patsey
Judy and Phil Pedrotty
Karen and Anthony Pendolino
Mr. and Mrs. Clifton A. Perren
Ms. Ida Perrine
Dr. Marjie L. Persons
Mr. Alexander Peter
Mr. John Peters
Mr. and Mrs. Paul J. Peterson
Mr. David M. Petkiewicz
Mr. Sam Petros
Mr. and Mrs. James M. Pfeiffer
Ms. Cynthia K. Phelps
Mr. and Mrs. David W. Pierce
Ms. Irene Pilot
Ms. Molly J. Pirie
Pleasant Valley Construction
Company
PNC Bank NA Corporate Office
PNC Wealth Management
Dr. and Mrs. John F. Pope
Mr. and Mrs. Chuck Portier
Ms. Shari Poteet
Ms. Beth Z. Potere
Mr. and Mrs. Steven J. Potirakis
Mr. and Mrs. D. Eric Prestegaard
Mr. and Mrs. Frank A. Preziuso
Mrs. Kathy Pullella
Mr. Jon Radulovic
Drs. Steven M. and Julia B.
Radwany
Ms. Stephanie Ramsay
Mr. and Mrs. Randall Rankin
Mr. and Mrs. Timothy E. Rasicci
Mr. Reshmi Raveendran
Rea Foundation, Inc.
Mr. and Mrs. Derek S. Redwine
Mr. and Mrs. Robert P. Reffner
Mrs. Nancy L. Reymann
Mr. and Mrs. Robert R. Rice
Mr. and Mrs. Michael J. Risaliti
Mr. and Mrs. Shawn L. Ritchie
Mr. and Mrs. Sam Rodriguez
Mr. and Mrs. Joe C. Rose, II
Rosemount Analytical, Inc.
Ms. Adrienne Rosenberg
Mrs. Bruce F. Rothmann
Mr. and Mrs. Edward A. Russell
Ms. Eileen Saffran
Mrs. Kathy M. Salem
Mr. James K. Salsburg
Sand Run Pharmacy
Ms. Shirley C. Saxton
Mr. and Mrs. Steven E.
Schonfeld
Mr. John D. Schumacher
Mr. and Mrs. Walter E.
Schwoeble
SeibertKeck Insurance
Ms. Shelley Sereni
Ms. Rita J. Service
Drs. Ajay K. and Kimberly Seth
Mr. and Mrs. David R. Shabino
Mr. Carl N. Shaheen
Mrs. Sadie N. Shaheen
Maureen Shannon
Mr. and Mrs. John R. Sharp
Mr. and Mrs. Steven B. Shechter
Elizabeth Sheeler
Mr. and Mrs. Timothy D. Sheeler
Mr. and Mrs. Robert C. Shoenfelt
Mr. and Mrs. William H. Silver
Mr. and Mrs. Joseph Siti
Ms. Janey Skinner
Mr. Richard R. Slocum and
Mrs. Eva Katherine Bertsch
Ms. Janus Small
Mr. Ken Smith
Mr. Michael J. Smith and
Ms. Jill R. Penrose
Mr. and Mrs. Rodney Smith
Mr. and Mrs. Steve Smith
Ms. Dawn Smoley
Ms. Jaclyn Smolinski
Girl Scouts from Brimfield created memory boxes for bereaved families.
Mr. and Mrs. Mark Spatz
Ms. Lynn Spragens
Mr. James Srp
Mr. and Mrs. Robert T. Stanton
Dr. and Mrs. Kim L. Stearns
Mr. and Mrs. Thomas J. Stecz
Mr. Michael Steel
Mr. and Mrs. John P. Stefanik
Mr. and Mrs. R. H. Steiger, Jr.
Mr. and Mrs. Bryan M. Stephens
Ms. Sandra K. Stewart
Mr. and Mrs. David H. Stoller
Mr. and Mrs. John V. Sturiale, Jr.
Sylvart Studio
Mr. and Mrs. Michael A. Tallal
Mr. and Mrs. Donald P. Tarosky
Ms. Lashonda Taylor
Dr. and Mrs. Robert L. Tener
Mr. and Mrs. Dan Ternosky
Mrs. Tina Thiel
Mrs. Judith Jones Thomas
Linda and William Thomas
Dr. and Mrs. Brooks Toliver
Totally Cooked Catering
Dr. Rodney Tucker
Mr. and Mrs. Christopher M.
Ulrich
United Mitochondrial Disease
Foundation
United Way of Summit County
Vanguard Charitable Endowment
Program
Mr. and Mrs. Mike Vermeulen
Vince Hrobat Insurance Agency,
Inc.
Ms. Diane L. Vishnia
Mr. and Mrs. Rick Vogt
Mr. Eric Voth
Mr. and Mrs. Robert F. Voth, IV
Mr. and Mrs. Donald Vreuls
Peggy Vreuls
Ms. Kathleen Wagner
Ms. Diane Wargo
Mr. and Mrs. Brandon W.
Watson
Mark A. Watson
Ms. Sara Jane Wax
Mr. and Mrs. Wayne W. Wax
Mr. and Mrs. Michael R. Weinsz
Ms. Kathryn Weise
Mr. and Mrs. Gary J.
Weisenburger
Ms. Lynn Weissert
Dr. Charles V. Wellman
Mr. Gregory D. Wells
Wellspring Photography
West Side Bakery
White Pond Crossing, Inc.
Ms. Allisa Whitt
Carol Whittaker
Ms. Lori Wiener
Wilbert Foundation
Ms. Mary E. Wiles
Bernett L. Williams
Mr. Conrad Williams, III
Ms. Linda L. Wilmot
Mrs. Ruby C. Winter
Dr. Janine Winters
Women’s Board of Akron
Children’s Hospital
Ms. Kimberly D. Woods
Jo and Bill Wooldredge
Mr. and Mrs. Randy Wooten
Mr. and Mrs. Clayton H. Wright
Mr. and Mrs. Robert Xeller
Mr. and Mrs. Johnny Yanik
Mr. and Mrs. William Yarger
The York Children’s Foundation
Mr. William Q. Zapf
Mr. Emil Zuberbueler
27
2011-2012
Haslinger Family
Pediatric Palliative Care Center
Report to the Community
CASSIDY JACKSON-CZECH
of Valley City, OH, created the artwork you see here.
At the age of 11, Cassidy painted this, her first
watercolor, to represent her vision of the “palette
of care team” and the role the team played in her life,
as she valiantly battled a rare form of cancer. Cassidy
got her angel wings on April 29, 2006, at the age of 12.
She was a remarkable young woman who is greatly
missed by her loving family and the entire staff at
Children’s who helped care for her.
One of Cassidy’s dreams was to become a famous
artist, known throughout the world. To honor this dream,
Cassidy’s painting has been reprinted on the Haslinger
Family Pediatric Palliative Care Center brochure and other
department materials, and has represented the center in
places as far away as Hungary. Cassidy’s artwork will
continue to represent our “Palette of Care Program”
at Akron Children’s as a permanent tribute to her
colorful spirit.
About Akron Children’s Hospital
Akron Children’s Hospital is one of the largest pediatric
Achieved Rankings In:
Cancer | Diabetes & Endocrinology
hospitals in the U.S. We are proud to be ranked among
Nephrology |Neurology & Neurosurgery
the best children’s hospitals in the country for pediatric
Orthopedics | Pulmonology | Urology
specialty care and nursing excellence. More than 780
providers strong, our dedicated staff handles more than 700,000 patient visits
a year. As an integrated, independent pediatric healthcare delivery system, we
have two hospital campuses and 80+ primary and specialty care locations
throughout northern Ohio. Besides expert medical care, we’re leading the way to
healthier futures for children and communities through prevention and wellness
programs. We are a teaching affiliate of Northeast Ohio Medical University, training
a new generation of pediatricians and specialists, and our research institute is
advancing pediatric medicine and improving patient care. Akron Children’s has
been caring for children regardless of a family’s ability to pay since 1890.
For more information, visit akronchildrens.org.
Haslinger Family
Pediatric Palliative
Care Center
One Perkins Square
Akron, OH 44308
330-543-3343
akronchildrens.org
12/13

Haslinger Family Pediatric Palliative Care Center 2011-2012

Transcription

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