Heroes Our heroes share stories — in their own words WINTER

Heroes
THE MAGAZINE OF CHILDREN’S MEMORIAL HOSPITAL
WINTER 2010
Our heroes share stories
— in their own words
Heroes
CONTENTS
IN THIS ISSUE
Members of the Children’s Memorial
family — including patients, parents,
siblings, physicians, nurses, researchers,
staff and donors — share their
stories in their own words. We invite
you to share your story online at
childrensmemorial.org/tellusyourstory.
On the cover: Jamarielle “Jam” Ransom-Marks, 11, has
undergone years of treatment for leukemia at Children’s
Memorial Hospital, including a stem cell transplant. A
proud cancer survivor, Jam shares personal reflections of
her journey on page 3.
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Do you have a suggestion for a future
theme or story idea? We’d love to hear
it! Please send an e-mail to the editor:
[email protected]
2 Helping families when they need us most
3 I’m a survivor
4 The personal inspiration for my research
5 The best holiday gift of all
6 My way of helping to find a cure
7 An opportunity to shape the future
8 Crown Sky Garden
9 Designing a healing oasis
10 Planning now for the move to Lurie Children’s
11 Carrying on Cal’s legacy
12 Building a brighter future for children
13 Why I give
14 The greatest rewards
15 Every day is inspiring
16 My harmonious life, thanks to Children’s
17 Round Up
Children’s Memorial Medical Center J. Christopher Reyes (Chairman, Board of Directors), Patrick M. Magoon (President and CEO)
Children’s Memorial Foundation Daniel J. Hennessy (Chairman, Board of Directors), Thomas J. Sullivan (President)
Heroes is published by Children’s Memorial Foundation Editor Alison DeShaw Contributors Elizabeth Keating, Dan Kening, Maureen King, Erin Shields, Aileen Tormon
Principal Photography Andrew Campbell Additional Photography Jan Terry Design Words&Pictures, Inc.
© 2010 Children’s Memorial Hospital. Written requests for permission to reproduce some or all of this publication are welcomed.
Contact Alison DeShaw at [email protected] or 773.880.6948.
We respect your right to privacy and will make every effort to remove your name from our mailing list, if requested. To do so, please forward a written notice
to Children’s Memorial Foundation, 2300 Children’s Plaza, Box 4, Chicago, IL 60614-6636 or send an e-mail to [email protected]
10%
Cert no. SW-COC-002352
INTRODUCTION
Big hearts, little donors: Former
cardiology patient Owen Edwards,
8, with his twin sister Kendall of
Libertyville, Illinois.
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Beyond medical care:
Helping families when
they need us most
By Nancy Heap, LCSW
The situations many of our patient families face today are much more
complex than when I started working at Children’s Memorial Hospital 14
years ago. Not only are they dealing with a child’s illness, they are also
struggling to provide basic necessities, such as a roof over their heads and
food on the table. With the economic downturn, even our most resilient
families are struggling.
Nancy Heap, LCSW, is the Manager
of Social Work and Palliative Care.
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One of my colleagues said it best: “Sometimes a child’s illness is not the biggest issue in a family’s
life, even if that illness is cancer.”
Social workers help families cope with the stress of having a sick child at every stage of the illness
— from dealing with a new diagnosis, to identifying resources and support, to helping the family
prepare for ongoing care or sometimes even the impending death of their child.
In my role, I manage Social Work, the Patient Emergency Fund, Palliative Care and Heartlight, a
program that helps families at the hospital, as well as in our community, cope with the death of a child.
I get to help families in so many different ways. I can’t think of a better, more creative job.
There’s one patient family that I will never forget. The mother had lost her job because of the time
she spent away from work to be with her dying son. The 16-year-old daughter pitched in by working at
a fast food restaurant and caring for her two younger siblings. There was no money for food, and they
were in danger of losing their apartment. Because of the wonderful donor-funded resources available
to us at that time, we were able to provide gift cards for groceries and gas. The boy spent his last days
surrounded by loved ones, and the family had a place to go home to after the boy passed away.
Finding the resources to help these families is an ongoing challenge. Our funding fluctuates and we
can’t always anticipate needs. Some families need only a little help, others need more than what we can
provide. But in all cases, we help families find support within their community. We really try to empower
families so they are better able to take care of themselves once they leave us.
Philanthropy makes it possible for us to offer these vital support services. I, along with many of
our social workers, would not be here if not for the generosity of our donors. The Patient Emergency
Fund, Palliative Care and Heartlight are completely funded by philanthropy. When we are able to step
in and help families when they need us most, it’s phenomenal, and a true testament to the many caring
individuals who support our mission.
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I’m a survivor
By Jamarielle “Jam” Ransom-Marks
Yes, I am a two-time cancer survivor and stem cell transplant recipient. But
I am much more than that. I am Jam, and I am 11 years old.
After thinking about my experiences at Children’s Memorial Hospital for this article, I realized I had
a page full of heartfelt, fun-filled memories and only a quarter of a page filled with painful ones.
The bad memories made me think of how I kicked cancer’s butt. Twice. Cancer and I have parted
ways, and Children’s Memorial is and will always be my lifesaver. I have been poked, examined, x-rayed,
isolated and woken up at all hours of the night at the hospital, but that never stopped me from being
strong. I never gave up the fight, and neither did Children’s Memorial. They are the reason for my
extraordinary journey.
Besides my parents, there are bucket loads
of people who have made a difference in my life
and recovery, but the most important ones are
Dr. Elaine Morgan and oncology nurse Maureen
Haugen. Together, they have fought this battle
alongside me for the past seven years. I look
forward to seeing them and I trust them. It is
special to have doctors and nurses that I can call
my friends.
The hardest part about spending time at
Children’s Memorial is being isolated. Isolation
(an infection control measure) can kind of feel
like the hospital’s version of jail. It is very hard
to spend time being cramped in a tiny room that
you are forbidden to come out of, but it isn’t all
bad. The peace and privacy of the rooms are
heavenly. Art and music therapists would visit
me during my isolation stays, and besides being
entertaining their visits made me feel calm and
consoled. I would always play the song, “What is
Love” on the synthesizer, and some of the artwork I created while in the hospital is displayed
in my house.
Now that I am up and running, our family has
found a way to give back. Each summer we host
a blood drive and a block party on our street to
celebrate the anniversary of my stem cell transplant. I feel so honored and thankful for the huge
number of people who come and donate blood. It
is important to give blood if you can, because it
saves lives. I know it saved mine.
Cancer does not define me. I am not cancer.
I am strong. I am a “Cancer Warrior.” I am a
Remaining strong through two bouts of cancer, Jam Ransom-Marks underwent chemotherapy,
fighter. I am not scared of cancer. It is smaller
radiation treatments and a stem cell transplant. Today she is a healthy sixth-grader and an
than me. It is not intimidating. I am a survivor.
inspiration to many.
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The personal
inspiration for
my research
By Nikia Laurie, PhD
W
Nikia Laurie, PhD, is Head of
the Retinoblastoma Research
Laboratory at Children’s Memorial
Research Center and Assistant
Professor of Pediatrics at
Northwestern University Feinberg
School of Medicine.
4
hen I was a child, a family member very close to me was diagnosed with cancer. As my family and
I surrounded him with love and support, I marveled at the courage and strength he displayed while
facing one of the greatest struggles of his life. Throughout my life, his example motivated me to display
fortitude when faced with challenges, and to work passionately for worthy causes.
As a retinoblastoma researcher, knowing that my work can make the difference in the life of a
child is my greatest motivation. My passion for learning and research inspired me to start my research
career at the age of 16, when I sought out volunteer positions in the science labs of local colleges in my
hometown. While an undergraduate at Xavier University of Louisiana, I spent my summers conducting
research at both Brown and Yale Universities.
With each new experience, my excitement for the potential of research to cure diseases grew. This
inspired me to pursue my PhD at Brown University and my postdoctoral training in retinoblastoma
research at St. Jude Children’s Research Hospital.
Retinoblastoma is the most common pediatric cancer of the eye. In the U.S., the majority of
retinoblastoma patients are diagnosed before their second birthday. Even though the vast majority of
patients survive retinoblastoma, this disease causes many children to lose their sight.
As a researcher, my goal is to improve the quality of life for children with retinoblastoma by discovering new therapies that will treat their cancer and save their vision. I am striving toward this worthy
goal in collaboration with other researchers and physicians at Children’s Memorial.
We have recently started a Retinoblastoma Center of Excellence, made up of physicians and scientists working toward a common goal, including Marilyn Mets, MD, Head of the Division of Opthamology;
oncologist Joanna Weinstein, MD; Marcelo Bento Soares, PhD, Director of the Cancer Biology &
Epigenomics Program at Children’s Memorial Research Center; and opthamologist Paul Bryar, MD, of
Northwestern Memorial Hospital.
We are studying the genetic changes that occur as retinoblastoma grows, so that we can find
ways to target the retinoblastoma tumor for treatment. Because of the close collaboration between
scientists and physicians at Children’s Memorial, we have a greater chance of moving new discoveries
from the laboratory bench to the patient bedside.
I am proud to be working alongside other dedicated researchers and physicians toward the worthy
goal of finding more effective treatments for children with retinoblastoma.
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The best holiday gift of all By Carolyn Schiffner
The dreams we imagine for our children
don’t include stethoscopes and surgical
suites. But sometimes it’s that one thing
we simply couldn’t have imagined that
forever alters their course.
After our 13-year old daughter Alison needed
emergency surgery due to complications from Crohn’s
disease, we were immediately forced to face the
harsh realities of a chronic illness, the necessity of a
prolonged hospitalization and the knowledge that we
were powerless to change what was to come.
Fortunately for Alison, and for all of us, we found
ourselves at Children’s Memorial Hospital, surrounded
by doctors and nurses who had both the determined
spirit and the ability to make that change for us.
Alison’s journey to health was not easy. Several
months slipped by in a repetitive routine of operating
room visits, tests and almost imperceptible progress.
Two days before Christmas, Alison had her third
major surgery — one we hoped would be the definitive
procedure to turn the course of her recovery.
Here are the words I shared with family, friends and neighbors following Alison’s surgery (drawing
inspiration from Clement Clark Moore’s poem, “Twas the night before Christmas”):
Twas the day of the surgery and in Ali’s room,
Mom and Dad await quietly each bit of news.
Hour by hour, the updates they came.
“She’s doing well,” or “Status, the same.”
The nurses outside gave us plenty of space,
With hope and concern shown on each caring face.
And me at my laptop and dad Scott in the chair,
Tried hard to decipher what had gotten us there.
No answers discovered, or reasons were found,
Just family and friends, and love that abounds.
When up from the OR, there rose the last call,
“They’re starting to close.” But that wasn’t all.
While prayers and good wishes swirled high in the air,
Carolyn Schiffner lives in Oak Park,
Illinois, with her husband, Scott,
and their three children — Alison,
Brad and Matt.
They spoke of success, with intestine to spare!
When what to our wondering eyes should appear,
But the team of our doctors, ever so near.
With a surgeon so skilled and nurses so dear,
We knew in a moment we had nothing to fear.
No leak! No more stricture! The fistula out!
Recovery and healing is now what it’s about!
We walked one last time to the recovery room,
But this time our steps weren’t heavy with gloom.
Our eyes how they twinkled! Our smiles so cheery!
It was hard to imagine a Christmas more merry.
But good things can happen on a snowy winter’s night,
So Merry Christmas to all, and to all a good night!
The joyful news of a successful surgery was, without a doubt, the best gift we would receive that
holiday season. A week later — after 109 days in the hospital — we were able to take Alison home. Our
family walked the long road to recovery with our family at Children’s, who provided a bright new light
to guide my daughter’s steps toward a healthy future and the possibility of dreams. This gift we were
given will never be forgotten.
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Hope for sale: My way of helping
to find a cure By Emily Zint
My brother, Andrew, was diagnosed with a malignant brain
tumor last winter when he was 15. He had surgery to remove
the tumor and needed radiation and chemotherapy treatments.
He had his final chemo treatment at Children’s Memorial
Hospital in September.
Emily Zint, 12, of Arlington Heights, Illinois, organized a garage sale fundraiser to benefit brain
tumor research in honor of her brother Andrew.
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H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10
When I first found out Andrew had a brain
tumor, I was shocked. It was a pretty difficult
time for all of us. I think it was challenging for my
parents to care for me and for Andrew, as well as
juggle their jobs. What was especially hard for me
was that even though Andrew and I sometimes
fought, he is still my only brother.
At the time, I had been going through my old
clothes and toys to donate items I didn’t want or
need. Then I thought, “Why not have a garage
sale to raise money for Children’s?” I had never
done anything like this, and I had no idea of how
much work was involved. I practically spent my
entire summer working on it. Fortunately, I’m a
pretty good organizer.
There was so much to do! I went through
every item to make sure it was something
someone might buy. Then I had to decide on a
reasonable price for everything. For “big ticket”
items, like my Barbie Swan Lake castle, I did
research on eBay to help price them. I originally
planned to sell only my things, but pretty soon
my parents and relatives started donating things
as well. Eventually I had a 30-page inventory of
things for sale!
We placed ads in newspapers and the reaction
was amazing. People were lined up three hours
before the garage sale began on the first day.
A lot of people came just to donate. Two guys
on motorcycles came to buy the Barbie castle
intending to give it back to me, but we had
already sold it for $100. They still donated the
money. My gym teacher dropped by to donate
$100 and the Spanish teacher at Andrew’s school
paid $100 for a 10-cent stuffed animal.
We had hoped to raise $1,000, and we ended
up raising more than $3,600! I was beyond
amazed. A few weeks later, Andrew and I came
to the hospital to present the money to his
neuro-oncologist, Dr. Stewart Goldman, and to
neurosurgeon Dr. Tadanori Tomita. The money
will help fund Dr. Goldman’s research into finding
better ways to treat brain tumors for kids like my
brother.
Discover how you can host your own fundraiser for the hospital at childrensmemorial.org/
circleoffriends.
A welcome return, an extraordinary
opportunity to shape the future
By John M. Costello, MD, MPH
Dr. John Costello tours the progress at the
construction site of Ann & Robert H. Lurie
Children’s Hospital of Chicago.
It truly feels like a homecoming
to be back at Children’s Memorial
Hospital. It’s great to work alongside
some of the same clinicians who
trained me during my pediatric
residency and fellowships in
pediatric critical care medicine and
pediatric cardiology.
One of the main reasons I left my positions at
Boston Children’s Hospital and Harvard University
to return to Chicago is the incredible potential
that Ann & Robert H. Lurie Children’s Hospital
of Chicago presents. Its proximity to Prentice
Women’s Hospital is a major advantage. This location will enhance our ability to care for newborns
with serious heart conditions who need urgent
cardiac stabilization and intervention, while
keeping them close to their mothers who are
recovering from delivery at Prentice. The close
proximity to Northwestern Memorial Hospital will
also facilitate our ability to transition the care of
our patients as they grow into adults with congenital heart disease. Their complex medical and surgical
issues are best served by close collaboration between pediatric and adult specialists.
Thanks to the generosity of the Regenstein Foundation, Eloise and Warren Batts, and many others,
I’ve been given the tremendous leadership opportunity to help shape how we treat children with heart
disease both now and in the future.
The new Regenstein Cardiac Care Unit will offer tremendous benefits for our patients, their families and our team. It will allow children with heart disease who require hospitalization to remain in the
same unit with the same caregivers from admission to discharge, significantly improving the patient
care experience. Technology and expert care will be brought to patients, rather than requiring them
to transfer to different units within the hospital. State-of-the-art technology will be used to monitor
patients, including a heart rhythm monitoring system that can be accessed from anywhere in the
hospital or remotely, and near-infrared spectroscopy, a non-invasive method for monitoring oxygen
supply to all parts of the child’s body.
To prepare for our transition to this innovative model of care in the new hospital, we’ve designated
nine cardiac intensive care unit beds in the pediatric intensive care unit of our current hospital facility.
This enables us to pilot the approach, make adjustments and train a highly specialized team of
caregivers.
I’m very excited about what the future holds. Over the years I’ve learned that it takes a team of
committed individuals to care for children with complex heart diseases. I’m privileged to join the
specialists in cardiology and cardiovascular-thoracic surgery who are working together to make all
of this possible.
John M. Costello, MD, MPH, is the Medical Director of the Regenstein Cardiac Care Unit.
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Crown Sky Garden
Mikyoung Kim, an internationallyknown landscape designer,
has completed her innovative
schematic design for the Crown
Sky Garden on the 11th floor of
Ann & Robert H. Lurie Children’s
Hospital of Chicago.
The space, named in honor of
The Crown Family, subtly divides
the 5,000-square-foot garden into
zones. Areas closer to the cafeteria
are designed for high activity and
performances, while areas closer to the
windows will encourage quiet activity
and respite for families and staff.
The primary planting in the Crown
Sky Garden will be bamboo, and the
highlight of this design is a translucent
interactive light wall that weaves
throughout the garden at different
heights and changes color and brightness as people approach it.
Mikyoung Kim shares her plans for the Crown Sky
Garden with Board members John Bryan, Paula Crown
and Maria Smithburg.
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Designing a healing oasis
for children and families
By Mikyoung Kim
I am a landscape architect, an
artist, a musician and a parent.
All those roles have informed my
perspective on the Crown Sky
Garden’s importance as a healing
environment.
At the start of the project I came to Chicago
on a “listening tour” and met so many families
who are here for the long haul. Because of this,
it felt important to design a space that rewards
the everyday experience. So I wanted to create
for them a place that seems to be missing in
other children’s hospitals: an oasis from the daily
operations of the hospital.
Children and families are under a great deal
of stress in the hospital, as are the doctors and
nurses and staff who care for them. They all
benefit from having green spaces available where
they can decompress and heal. The healing
process is larger than MRI machines and pills that
you take: it’s also about the experience.
What guides the space is the interactive
aspects that allow for kids to define the garden.
Sound and color are defined through a series
of interwoven ribbons of material — bamboos,
wood, colored resin panels, water and recycled
glass in the flooring.
The space is an instrument that children
transform by engaging light and sound. The
sound is activated by a series of interactive sensors throughout the garden that highlight playful
aural conditions of water — sounds like gurgle
and splash. These work off of the baseline of the
real water runnels that offer a soothing trickling
of water throughout the garden. A central interactive LED light wall plays off of the water theme
and creates visual aspects of water for viewing
and play. We are also integrating historical wood
from the Chicago area into the garden, including logs that were part of the buildings at the
Columbian Exposition.
In my work, I like to focus on designing
solutions that are collaborations. For this project,
I was privileged to spend time with the Family
Advisory Board and the Kids Advisory Board. I
came away humbled by the strength of those I
met. The maturity of the children and teenagers,
and the perspective of the parents, was quite
moving. I left feeling a weight of responsibility to
make this place very special.
Mikyoung Kim is principal of Mikyoung Kim Design in Brookline, Massachusetts. Kim’s award-winning projects
have varied from civic gardens and municipal playgrounds to large-scale parks and institutional master plans.
Her work has been featured in Architectural Record, Sculpture, Landscape Architecture, Land Forum, and Pages
Paysages. She is an Associate Professor and Head of the Department of Landscape Architecture at Rhode Island
School of Design.
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Planning now for the move to Lurie Children’s
By Maureen Mahoney, RN
Maureen Mahoney, RN, is Chief
of New Hospital Transition and
Occupancy Planning.
10
Every time I walk through the lobby and see our brave patients, I am reminded how momentous our transition from Children’s Memorial Hospital to our new facility, Ann & Robert H. Lurie
Children’s Hospital of Chicago, will be for them and for generations to come.
I’ve been involved in the planning and development of Lurie Children’s since 2006. Our goal
is to be 100 percent ready to provide excellent care and service when we open the doors in June
2012.
As part of our research, we visited many hospitals across the country that underwent moves
similar to ours to learn from their experiences. The message was clear: Plan early, plan well and
be inclusive.
Everyone, from our physicians and staff to patients and families, is passionate about the new
hospital project. They have contributed tremendously at every phase, including programming,
design and now transition planning.
Our transition plan is quite comprehensive and covers elements such as operations, training
for more than 5,000 physicians and staff, moving approximately 200 inpatients in one day and
de-commissioning the old building.
Staff in clinical departments will have the chance to walk through their future workspace so
they can begin to envision what it will look like and how their daily workflow might change.
Members of our Kids Advisory Board and Family Advisory Board are helping us determine
the best way to prepare our patients and their families for the actual day of the move. Family
participation will be encouraged, and we want to allow a parent to be in the ambulance as his or
her child is being transported to the new facility to reduce anxiety.
At times, the process seems daunting. I’ve never worked harder in my life, but it is worth
every minute. I think we’re all going to look back with a lot of pride and joy in what we have
accomplished together, and also look forward with excitement about what the future holds.
Lurie Children’s will be a great place to provide care and a great place to work.
H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10
Carrying on Cal’s legacy By Tom Sutter
People often ask me if I believe in destiny and because of our son, Cal, I do.
His young life has had a purpose beyond what we could have imagined.
Tom Sutter and his wife Stacey are the
founders of Cal’s All-Star Angel Foundation
(calsangels.org). They live in South Elgin,
Illinois with their six children: Jessie, Ryan,
Jason, Kiley, Ellie and Lexie.
Our lives were forever changed when Cal, an all-star baseball player, was diagnosed with
acute myelogenous leukemia at age 12. The battle with pediatric cancer is a nightmare no
child or family should ever have to experience, but we were blessed to receive an outpouring
of support from our community, church and employers. We soon discovered that many
families are not as fortunate.
I’ll never forget a conversation I had with the dad of a fellow patient. He was going back
and forth between two hospitals visiting his wife, who had breast cancer, and his son who had
leukemia. This man was going to great lengths to avoid any expenses so that he would have
enough money to eat. I told my wife, Stacey, “No matter what happens with Cal, we’ve got to
do something to help other families affected by cancer.”
Throughout everything he went through, Cal never gave up hope and was always concerned about the well-being of the other children. He was caring and wise beyond his years.
Our hearts were broken when Cal ultimately lost his battle with leukemia in August of 2006
at the age of 13.
As we mourned, Stacey and I talked about finding a way to carry on Cal’s courageous spirit,
to use his short but meaningful life to help others. We founded Cal’s All-Star Angel Foundation
the following spring and what started with an e-mail to 30 people has grown into a positive
force beyond our imagination.
In just a few years, we have raised nearly $500,000 to
grant the wishes of nearly 100 pediatric cancer patients
(trips, shopping sprees, laptops and desktop computers)
and provide financial assistance (rent, bills, groceries and
transportation) to their families. We’ve also provided college scholarships and donated countless toys, games and
electronics to Children’s Memorial Hospital. Making sure
kids have something fun to do in the hospital is important
to us because it was important to Cal.
In the new facility, Ann & Robert H. Lurie Children’s
Hospital of Chicago, Cal’s legacy is continuing. Thanks to
our generous supporters, we recently made a significant
funding commitment to help bring to life the extraordinary design plans for the hospital’s 17th floor, where
children with cancer will receive care.
We are the first organization to contribute to the
Creative Arts Community Partnership Program, which is
enlisting Chicago’s cultural icons to help design various
floors of Lurie Children’s, infusing unique themes, art and
activities (the 17th floor partner is the Chicago Children’s
Museum, for example). In addition, we also plan to help
stock the playrooms on the 17th and 18th floors with fun
things to do for kids of all ages.
We know firsthand how your surroundings can affect your state of mind when you’re in the
hospital. A healing environment, with soothing colors, activities and welcome distractions, can
help put the whole family at ease.
As I envision the moment when I’ll first see the display in the new hospital bearing Cal’s
name, I get choked up. Cal would be amazed at what we’ve been able to accomplish in such
a short amount of time all because of the people he touched and inspired during the equally
short, but meaningful time we all were blessed to have with him. Our hearts will always miss
Cal, but we take comfort in knowing his legacy of caring continues.
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Building a brighter future for children
You can help make
Chicago the healthiest
place in the nation for
children.
Our children deserve no less than the
very best health care possible. We hope
every Chicagoan will contribute to help build
the state-of-the-art Ann & Robert H. Lurie
Children’s Hospital of Chicago. What could
be more important than investing in our
children’s health and well-being?
Please don’t wait, make
your contribution today.
Here’s how:
Learn more:
heroesforlife.org
Make a gift:
773.880.4237
(or online)
Share your story:
childrensmemorial.org/
tellusyourstory
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Why I give
By Joan Hinsdale, RN, MBA
I knew I wanted to become a nurse after
taking care of my ailing grandmother in my
pre-teen years. It gave me a sense of pride
to be able to help her do basic things such as
eating, getting dressed and taking medications. On my drive to work every morning,
I think of the day ahead and feel fortunate
to have the opportunity to contribute to the
care of children and families.
Joan Hinsdale, RN, MBA, is a
pediatric neurology nurse at
Children’s Memorial Hospital,
where she began her nursing
career in 1985. She is a co-chair
of Heroes Among Us, the
employee fundraising initiative
of Heroes for Life.
My greatest rewards are the hugs, the kids’ artwork and
the tearful words of gratitude from parents. I have a journal with the name of every child I cared for
who has left this Earth. Each one of those children has affected my life in a profound way. They are my
angels.
I am inspired by the ability of our staff to love each child and family throughout an illness. We often
become an extension of the family. The daily gestures of human kindness are why I continue to work
at Children’s Memorial Hospital. I have tried other hospitals and have found that nothing matches the
quality of care here.
Once you work at Children’s Memorial, you are never the same. It has made me realize what is most
important in life.
When thinking of ways to motivate my fellow employees to give to Heroes for Life: Campaign for
Ann & Robert H. Lurie Children’s Hospital of Chicago, I was reminded of my mother. Why? Because she
would always tell me to give a gift that I would love to have myself.
I want to do my part to help ensure that Children’s Memorial, soon to become Ann & Robert H. Lurie
Children’s Hospital of Chicago, is here for my grandchildren and generations to follow. I donate to the
cause because I want the hospital to touch as many lives as possible.
Without contributions from all of us, the work we do every day would not be possible. Each dollar
given helps fund the most advanced technology and equipment, provide private rooms where children
can heal better and recruit the most knowledgeable and experienced caregivers.
To me, no matter what your role is — cook, technician, nurse, unit clerk, doctor, or operator — we
are all heroes when we go out of our way to make a difference in the life of a child.
H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010
13
Giving my time, receiving
the greatest rewards
By Roz Supera
Roz Supera (with a young surgical
patient and her father) has been a
volunteer in the surgical waiting area
since 1975.
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I have always had a love for children and an interest in health care. When
my youngest child entered school, I eagerly took a volunteer position in the
surgical waiting room at Children’s Memorial Hospital. I’ve been a volunteer
for 35 years now, and it has turned out to be a life-altering experience.
When I started, some of the hospital rules
were quite different. Parents had to say goodbye
to their children in a surgery holding area and
were not allowed into the recovery room after
their children woke up. I would often be with
children just before they went into surgery, when
they first came out and even in the operating
room sometimes. But there is one thing that has
not changed and that is the superb care given to
children and their families.
I am often asked the reason for my longevity
as a volunteer. My answer is simple: the surgeons,
anesthesiologists, nurses and other staff at
Children’s Memorial are simply the best. I have
never witnessed one instance where patients and
their families were not treated with the utmost
care and respect.
H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL W IN TER 2 0 10
Whatever I have given to this hospital pales
in comparison to what it has done for me. I have
a wonderful family and many interests and
involvements, yet those moments when I can be
of assistance to families during a stressful time
in the surgical waiting room have defined my life.
The gratification is impossible to fully describe,
and I have been touched by so many families over
the years.
It has been a privilege to be associated with
this very special institution, and I look forward
to an exciting future when Ann & Robert H. Lurie
Children’s Hospital of Chicago opens in 2012. I’ve
taken a tour of the building, and it’s going to be a
wonderful facility. What will make it really special,
though, will be the people who work there — the
same people who have made Children’s Memorial
such a special place over the years.
Every day is inspiring
By Gina Landfair, OTR/L
The people I meet through my job
inspire me every day. How many
people can say that? As a pediatric
occupational therapist, my ultimate
goal is to help children function at
their maximum potential.
Gina Landfair, OTR/L, cares for
Children’s Memorial patients at the
Westbrook Corporate Center, near
the Children’s Memorial Outpatient
Center in Westchester, Illinois.
The work of children is to play, learn and be
active members of their families and communities. A child’s medical condition can get in the
way of these activities. For example, a child with
a neurological disorder may suffer muscle weakness, poor coordination and paralysis, which can
hinder his or her physical and developmental
growth.
Initiating occupational therapy during
preschool years is most beneficial because this
is when learning and development is occurring
rapidly. It becomes more difficult for a child to
learn particular skills after the preschool years.
I work with children who have sensory
processing disorders (sensitivity to textures and
clothing, for example), orthopedic injuries or
developmental delays. During an occupational
therapy session, we might work on several different areas, from fine and visual motor skills, to
visual perceptual skills strengthening exercises
or a range of motion exercises.
A patient who really made an impression on
me was a 3-year-old girl with congenital musculoskeletal deformities. Initially, she could not hold her
cup, color with a crayon, sit on a swing or crawl. But through weekly occupational therapy, she learned
to feed herself, draw and assist with self-care tasks like dressing and bathing. She and her family are an
inspiration to me. They taught me a great deal about the power of determination and hard work.
Long before I started working at Children’s Memorial, I was impressed with the staff. After one
particular visit, I knew I wanted to work here. My daughter, who has both physical and cognitive challenges, had developed a deep fear of hospitals and doctors. I’ll never forget how the nurses put her at
ease and kept her smiling, and how personable and kind the physicians were.
My personal experience as a parent of a special-needs child influences my approach with my
patients and families. I know that many occurrences can interrupt a family’s routine and I always
consider this when creating their home exercise program so that they can easily incorporate it into
their day or combine it with other therapies.
My daily interactions with my patients have taught me to approach life with a fun, happy and hopeful outlook. I am inspired by their ability to surpass their goals in the midst of dealing with so many
challenges. They have a unique way of spreading joy into your life.
It feels wonderful to come to work every day. I am proud to be a part of this special place we call
Children’s.
H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010
15
My harmonious life,
thanks to Children’s
By Michael Hall, DMA
My parents were told I would never walk. As a
baby, my congenital hip condition was improperly
treated by an out-of-state doctor, causing my
pelvis and femurs to shatter. I spent the next 18
years undergoing dozens of corrective surgeries
at Children’s Memorial Hospital, where we
received hope for the first time.
Michael Hall, DMA, lives with
his wife, Kristine, and their two
daughters in Chicago’s Hyde
Park neighborhood. He performs
internationally as well as locally
with the Chicago Philharmonic and
the Ravinia Festival Orchestras,
and is on the faculties of Illinois
Wesleyan University, VanderCook
College of Music and the Chicago
Academy for the Arts.
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The late Mihran Tachjian, MD, was my main surgeon and savior.
He was determined that I would walk, constantly reassuring my
mother, “Mommy, we will fix your baby,” as he tried a number of
experimental procedures to correct my legs and hips as I grew.
I spent so much of my life at Children’s that it felt like home. My
parents made the trip almost daily from our home in Valparaiso,
Indiana, to the hospital to be with me. Many times my mother would
sleep overnight at the hospital and then drive to work in Elkhart,
Indiana, and back again. The love from my parents was bottomless. I
can only dream of being as dedicated a parent.
One day, my parents bought me a viola from the hospital’s White
Elephant resale shop. They had noted my interest in a piano in the
hospital’s rec room and thought I would enjoy learning a new instrument. I soon fell in love with music, a
passion that has steered the course of my life.
My viola has taken me through three college degrees and several times around the world. Today
I am a professional musician and a music teacher at three institutions. I’ve also performed on music
soundtracks and made commercial recordings. I even met my wife through music and we now have two
beautiful daughters.
Children’s has done so much for me: It gave me the precious ability to walk, which I did for the first
time at age 16; it fostered my love of music; and it enabled me to appreciate the simple things in life. As
a child in the hospital, I had only seen the world through a television screen. I couldn’t wait to get out
and experience it for myself.
I owe my life today to Children’s. It’s not just the renowned medical treatment that makes it special.
It’s the never ending support offered to children and families, who are experiencing the most difficult
times in their lives. There were so many wonderful people at Children’s. We never felt like numbers; we
were loved family members.
I had my last major surgery at 18 years old and was told I would need additional procedures around
age 32. I’m now 42 and still doing great. Dr. Tachjian’s work is even better than he imagined. In fact, I’ve
hiked more than 2,000 miles throughout the world, and last year I completed my first marathon as part
of the Children’s Memorial Marathon Team. I felt compelled to give back, to reciprocate in the hope
that young patients today would see that Children’s does everything possible to help make our lives as
fulfilled and enriched as we dare to dream.
H E ROES CHILDRE N ’ S M E MO R I AL H O S PI TAL WIN TER 2 0 10
ROUND UP
Gold Coast Fashion Award Show
Marks 55 Years
In October, more than 1,300 people attended the 55th Annual Gold Coast
Fashion Award Show, the signature fundraising event of The Children’s
Service Board, an Affiliated Organization of Children’s Memorial Hospital.
The show’s net proceeds of more than $370,000 will go toward the board’s
fundraising commitment to the Division of Pediatric Surgery at Children’s
Memorial, the largest provider of pediatric surgery in the Chicago area.
From left to right: Co-chair Vicki Stauber, 2009 Gold Coast Fashion Award
winner Romona Keveza, Co-chair Kim Friesen and The Children’s Service
Board President Jeniece Higgins.
Marathon Team Goes the Distance
This fall, 312 runners went the distance for kids in the Bank of America Chicago
Marathon, raising more than $370,000 in net proceeds for patients and families
at Children’s Memorial Hospital. The Children’s Memorial Marathon Team is a
dedicated group of runners who fundraise for the hospital during their training to
help improve the lives of seriously ill children. Carl Allegretti, pictured with his
wife Tammy, was the team’s top fundraiser, raising more than $81,000 – a record
for the team and the marathon. Carl and Tammy are grateful parents whose
son Joey has been treated at Children’s Memorial for leukemia. To learn more
about Children’s Memorial Marathon Team, please call 773.880.3706 or visit
childrensmemorial.org/marathon.
COMING UP NEXT: Kohl’s Step Up
for Kids on January 30
Help the kids at Children’s Memorial
Hospital reach new heights by participating
in Kohl’s Step Up for Kids, a stair climb to the
top of the Aon Center, Chicago’s third tallest
building. The event benefits K.I.D.S.S. for
Kids, an Affiliated Organization of Children’s
Memorial, which raises funds for the hospital’s
Department of Family Services. Some step
as part of an organized team, including
Lochie Daish, pictured here, a member of the
British School team, which raised more than
$8,000 last year. Make plans to join us on
Sunday, January 30, 2011 at 8 a.m. Please call
773.880.3036 or visit childrensmemorial.
org/stepup to register today.
Thanks for
another great
year of improving
children’s lives!
Celebrate the year’s accomplishments with
us. Look for the 2010 Annual Report online
in February 2011: childrensmemorial.org/
annualreport.
In our donor survey, many of you told us
that you prefer reading the Annual Report
online. In response, we are greatly reducing
the number of printed copies. Thank you for
helping us to conserve natural and material
resources.
And while you’re online, sign up to receive
monthly e-updates at childrensmemorial.
org/heroesupdate.
H E RO E S C H I LD R E N ’ S M E MO R I A L H O S PI TAL W I NT ER 2010
17
CHILDREN’S MEMORIAL HOSPITAL
2300 Children’s Plaza, Box 4
Chicago, Illinois 60614-6636
Address Service Requested
Non-Profit Org.
U.S. Postage
PAID
Chicago, IL
Permit No. 3470
childrensmemorial.org
heroesforlife.org
Also visit us on:
Help children in the hospital this
holiday season
Your gift will help provide compassionate care for children and families in
the hospital. For example:
u
Your gift of $50 can place special dolls that absorb a parent’s scent into the incubators
of critically ill newborns, allowing parent and child to bond.
u
Your gift of $100 can provide 3 months of assistance with parking and transportation
costs for a family experiencing severe financial difficulty after their child’s cancer
diagnosis.
u
Your gift of $250 can house a family for a week at Kohl’s House while their child
recovers from organ transplant surgery.
u
Your gift of $500 can provide the irreplaceable gift of bereavement photography
services for a family coping with the impending loss of a child.
u
Your gift of $1,000 can provide a year’s supply of musical instruments and materials
for children in the hospital’s music therapy program.
Please, give today so all our children will have hope for a healthier tomorrow.
Return the enclosed envelope, visit childrensmemorial.org/heroesmag or call
866.355.2525.
Your gift helps
patients like Kayla
When she was just 2 years old,
Kayla was diagnosed with leukemia and
underwent chemotherapy and radiation
treatments for nearly 3 years. Today,
thanks to the expert care at Children’s
Memorial Hospital, 9-year-old Kayla is
in remission. She is a straight-A student
who enjoys dance classes. “You’d never
know what she’s been through,” says her
mother, Michelle. “She’s doing so well,
and every day we thank God for that.”
Give online at childrensmemorial.
org/heroesmag or call 866.355.2525.
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