Our Newsleter - Joliet Area Community Hospice

Newsletter
Passages from Joliet Area Community Hospice
Heartache, Humanity, Hope and Hospice
and family to find out specific needs and
determine the best way to care for their needs.
For Steven, we were able to provide comfort
through continuous pain medication, oxygen,
wound care and a hospital bed. Our visits
increased as his needs increased. “Most
importantly, we were able to educate and
support Steven, his parents and his brother as
the disease progressed.”
“Our social worker, Debbie Mitrakos, was able
to provide emotional support to the entire family
and began the process of making one of Steven’s
final wishes come true,” Laurie said.
Heartache
Life, and all around it, can change in an instant.
A 20 year old with a passion for auto racing and
driving demolition derby cars was diagnosed
with Neuroblastoma in the spring of 2009.
Neuroblastoma is a malignant (cancerous)
tumor that develops from nerve tissue. It
primarily occurs in infants and children.
Humanity
Denise Goyack’s co-workers, well aware of her
son’s situation and of the pending visit to
relatives in South Carolina and unbeknownst to
her, went from employee to employee and
generously collected enough money to cover the
entire trip. An anonymous co-worker even
booked a 5 star hotel with frequent flyer miles
for the entire Goyack family.
Hope
A simple wish, “I would love to talk to a NHRA
or NASCAR driver” triggered quite an amazing
response. Strangers coming together then
guided by the same response mechanism
“helping in any way they can” touched by the
courage of a young man and his family. People
responding to other’s needs, co-workers,
corporations, athletes, clinicians, neighbors and
relatives. Strangers to one another, yet
singularly focused on acts of generosity and
compassion for Steven and his family.
Lingering back aches, thought to be racing
related, sent him to what he thought was a
routine visit to an urgent care center. X-rays
prompted a quick trip to the oncologist and a
battery of tests resulted in the heart breaking
diagnosis. Steven Goyack’s response was “no
tears Mom, we fight” and fight he did. Valiantly
he went from treatment to treatment in and out
of the hospital until spring of 2011. A young
man who courageously fought for his dreams of
life and racing was told there were no other
curative treatment options for him. A long quiet
trip home ensued, and like a race car driver
going over the details of a race course, Steven
decided he wanted to make a final trip to South
Carolina to say farewell to relatives; and shared
his wish to die at home. The whole family knew
that they had to make these things happen for
Steven but how? That question was answered
quickly.
The trip was the perfect send off for Steven
spending time with loved ones, having fun with
family and at times forgetting about the cancer.
The week flew by and as the departure time
neared, Steven beamed with pride after
accepting the invitation to be godfather for a
cousin’s unborn baby, due 3 months later. His
cousin knew what it would mean to Steven;
Steven knew he would not be there.
Within days of the family’s return, Steven was
back in the hospital and from there came
home under the care of the Joliet Area
Community Hospice (JACH)
Pediatric Program.
Joliet Area Community Hospice RN, Laurie
Mungovan said, “When a person expresses a
desire to die at home, hospice is there for
them. We are able to talk with the patient
Continued on page 3
FALL 2011
Page 2
• Letter from CEO
• Calendar of Events
• Thank You!! From JACH
Page 3
• Did You Know?
• JACH Notables
Page 4
• What is pediatric palliative and/or hospice care?
• Lights of Love Video

LetterFromCEO
The cover story of this Newsletter-Passages is a very touching story of people coming together to help a young man and his family cope with a life
limiting illness. As mentioned, we hear and see stories similar in nature everyday here at Joliet Area Community Hospice. We care for over 1,200
patients a year. About 2% of that total was taken care of by our Pediatric Hospice and Palliative Care Program.
Today, over 500,000 children a year experience life limiting conditions that lead to premature deaths in the U.S.. These conditions, unlike in adults,
are commonly neurological or genetic in origin. While they are at risk for shorter life expectancy, they may live for extensive periods of time, even
years.
The traditional Medicare/Medicaid Hospice model is designed to meet the needs of dying adults and not these children with the life limiting illnesses
with unpredictable illness trajectories. These programs do not cover extended palliative care programs
today and the care continuums that characterize strong palliative programs are infrequently covered by
private insurance. I have joined the Greater Illinois Pediatric Care Coalition to address these problems.
We are working with state legislators and the Director of Healthcare and Family Services to establish a
funding program throughout the state that will meet the needs of these children and their families.
We, at Joliet Area Community Hospice, are committed to serving these children and their families. We
are committed to providing the highest quality of care and in meeting the needs of the community. We
are very proud of the award bestowed on Dr. Thomas Moore, our Pediatric Medical Director, by the
U.S. News and World Report magazine described on this newsletter’s “JACH Notable” section. We are
committed to growing the JACH Pediatric Hospice and Palliative Program and are honored to have Dr.
Thomas Moore as our Pediatric Medical Director.
We are honored by your support and we greatly appreciate all that you do for Joliet Area Community
Hospice. Thank you.
Rick Kasper, CEO
CalendarOfEvents
“Puttin’ On The Glitz” Style Show
November 6, 2011
Renaissance Center Joliet, IL
11:30 am
$50 per person/$500 for Table of 10
Lights of Love Ceremony
November 23, 2011
Premier Sponsor: Tezak’s Home to Celebrate Life
Sponsor: D’Arcy Motors
5 pm to 7 pm
ComEd Festival of Trees
Rialto Square Theatre
$10 Memorial Ornament Donation
Up to 6 complimentary tickets for
admission per ornament donation
For information on all of these events and
more please visit www.joliethospice.org or call
at 815-740-4104.
FromJACH
Thank you to the following organizations and
businesses for their fundraising efforts for
Joliet Area Community Hospice:
DH Choppers
Midwest Generation
21st Annual Elwood Community Days Cruise Night
McBride’s Pub and Grille
Bill Jacobs Dealerships
2

Heartache, Humanity, Hope and Hospice
(continued)
Debbie alerted the hospice staff of his request and contact was made with NAPA Auto Parts executive Tim
Scanlan. Upon hearing the story, Tim took time out of his busy day and made numerous phone calls to
the NAPA Racing Team in Atlanta GA and within hours, was in touch with NHRA driver Ron Capps. Ron
happened to be setting up for a busy racing weekend at the Route 66 Raceway in Joliet at the time. At 7
p.m. that evening, despite major race preparations, Ron stopped what he was doing and made the call to
Steven. Unable to speak at this time, Steven did flash the thumbs up gesture to his family and was visibly
thrilled to hear from Ron.
NASCAR’s Martin Truex, driver of the NAPA Toyota car, also placed a call but Steven was declining and
unable to take the call. Martin then rushed an autographed NAPA model car to Steven. Scott Paddock,
CEO of the Chicagoland Speedway, learning of Ron Capps call to Steven, made contact with JACH asking if
they could be of any help to Steven and his family. Scott did not want to bother the family at the time.
Corporate executives, athletes, the NAPA Racing Team—all strangers to the Goyack’s yet all willing to
drop what they were doing to grant the wishes of this dying racing enthusiast, loving son, loving brother,
and loving godfather. Steven passed away shortly thereafter.
Hospice
It is very humbling to witness the response of all of these people from all walks of life to help out a
courageous young man and his family. Their kindness and compassion can and does make a difference.
We at Joliet Area Community Hospice appreciate the kindness of these folks and thought you should know
this story. A special thank you to the Goyack family for allowing us to share their story.
Ron Capps NAPA NHRA Driver
At Joliet Area Community Hospice, these types of events happen every day. Our Pediatric Hospice and Palliative care offers hope and comfort to patients
and families. “Reassurance” is the word Denise Goyack kept using when asked what the Joliet Area Community Hospice Pediatric staff gave to the
Goyack family. To learn more about Pediatric Hospice and Palliative Care and how this program may meet your needs or the needs of a loved one please
call us at 815-740-4104 or visit our website at www.JolietHospice.org
JACHNotables
DidYouKnow?
Admission Criteria for JACH Pediatric Hospice
and Palliative Care Program is:
Thomas Moore, MD, Pediatrics
Dr. Thomas Moore, our Pediatric Hospice and
Palliative Care Medical Director, was
recently named to the “Top Docs List”
published by the U.S. News and World Report
magazine. Dr. Moore, on our staff for the past 6 years, has
distinguished himself and our program as “Tops” in the field.
• Age: 0 to 21 years old.(Over 21 under
special circumstances)
• A life limiting illness or condition for
Pediatric Palliative Care
• A life expectancy of six months or less if
the disease runs its normal course for
Pediatric Hospice Care
Congratulations Dr. Moore for this achievement, although our
patients and families and everyone here at JACH have known this
for a long time.
• The average length of service for JACH
Pediatric Hospice and Palliative Care
has been 439 days
3

What is pediatric palliative and/or hospice care?
Pediatric palliative and/or hospice care (PP/HC) is both a philosophy and an
organized method for delivering competent, compassionate, and consistent
care to children with chronic, complex and/or life-threatening conditions and
their families. This care focuses on enhancing quality of life, minimizing
suffering, optimizing function, and providing opportunities for personal and
spiritual growth. Planned and delivered through the collaborative efforts of
an interdisciplinary team with the child, family and caregivers as its center,
PP/HC can and should be provided along with concurrent disease-modifying
therapy or as the main focus of care. PP/HC is achieved through a
combination of active and compassionate therapies intended to comfort and
support the child, as well as family members and other significant people in
the child’s life. Effective management of pain and other distressing symptoms,
together with psychosocial and spiritual care, are of critical importance
beginning at diagnosis and continuing throughout the entire course of a
child’s life and beyond. Therapies take a holistic approach, assisting children
and families in fulfilling their physical, psychological, educational, social and
spiritual goals while remaining sensitive to developmental, personal, cultural
and religious values, beliefs and practices.
PP/HC differs from palliative and/or hospice care delivered to adults in
several important ways. Children with palliative care needs range in age from
prenatal to adult (those with conditions followed by pediatric subspecialists
or those whose developmental and/or physical challenges are better served by
pediatricians); PP/HC teams must thus be able to care for patients with wideranging
diagnoses whose understanding of illness and decision making
changes significantly throughout the developmental spectrum. Pediatric
trajectories of illness, clinical models of care delivery, funding mechanisms,
research paradigms, educational initiatives, communication strategies, ethical
concerns, staffing ratios and management, and effective pain/symptom
management interventions are all significantly different from those that are
effective for adult patients.
Lights of Love Video
Lights of Love Ornament
Lights of Love, this year at the Rialto
Square Theatre, will include a memorial
tribute video. A tribute to honor and
celebrate the lives of those we have lost.
This professionally created video will be
shown in the theatre on a huge movie
screen.
Please consider honoring your loved
one in this video simply by supplying us
with a photo. The photos can be
submitted in the following ways.
1. By mail to JACH-ATTN: Jodi Wulff 250 Water Stone Circle,
Joliet, IL 60431
2. Drop off at JACH
3. Email a digital image to jwulff@joliethospice.org
Photos MUST be received by November 4th. All photos that are mailed
or dropped off will be returned the evening of the ceremony.
Visit our website for more information www.joliethospice.org.
NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. April 2009
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Joliet, IL 60431
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