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by Whitley Hill with Bill Clayton
Visit the University of Michigan C.S. Mott Children's Hospital
and you may be surprised to come face to face near the entrance
with Georges Seurat's A Sunday on La Grande Jatte: a sunlit
park, a river, children playing.
Oh, it's not the original; that's hanging in the Art Institute
of Chicago. But in many ways, this wall-sized reproduction is
far more valuable than the real thing. That's because it was
painted by 125 young U-M Mott patients, their siblings and parents,
on a pre-shrunk hospital bed sheet that was folded into sections
and passed from bed to bed. The painters ranged from a 32-month-old
leukemia patient to a young woman awaiting a heart transplant.
Look closely. Thousands of tiny dots cover the surface with
brilliant reds, blues, yellows and greens. Thousands of moments
when a child was thinking about color, form and accomplishment
instead of pain and procedures, when a parent or sibling was
thinking about trips to the park instead of trips to the doctor.
Step back and look again. The painting is the perfect image
to greet people as they come through the doors of this hospital.
Like Mott itself, it's the result of hundreds of people working
together to make something beautiful, powerful and positive.
In 1901, Love Palmer, widow of Alonzo B. Palmer, gave the University
$20,000 to build a children's ward on Catherine Street, one
of the first in the nation. The 75-bed Palmer Ward was completed
in 1903 but for years had to share space with other patients.
Then, in 1921, departing Medical School Dean Victor Vaughan
established pediatrics as an independent department, strengthening
the focus on children. Children's healthcare at U-M took a giant
step in 1964 when Flint industrialist and philanthropist Charles
Stewart Mott gave the University $6.5 million for the construction
of a separate children's hospital on the medical campus. In
1969, U-M Mott Children's Hospital opened its doors.
One wonders if Palmer, Vaughan and Mott could have imagined
their efforts would one day become a place where hearts are
transplanted, cancers cured, organs rebuilt, and where kids
play "hallway hockey" outside rooms filled with art
projects. Could they have imagined a hospital so advanced and
so special that it draws families from all over the world to
a small midwestern city? Could they have imagined a bed-sheet
Seurat?
Perhaps they could have. Since the beginning, pediatric care
at Michigan has included a special focus on the well-being
of the entire child. Seeing children as deeply feeling and
creative individuals, whole in their own right and not just
small adults with symptoms, has defined care at U-M. It's
that kind of forward-thinking — the blending of compassionate
care and hard science-that has made the practice of children's
medicine at Michigan as important and successful as it is
today.
When, earlier this year, Child magazine produced a ranking
of the best children's hospitals in America, the University
of Michigan C.S Mott Children's Hospital appeared ninth among
178 children's hospitals. Mott chief administrator Patricia
Warner, who's headed the hospital for seven years, was thrilled
with the news.
Gilbert Omenn, M.D., Ph.D., U-M executive vice president for
medical affairs and chief executive officer of the Health System,
was also pleased with the recognition, noting the wide-ranging
teamwork that had made the award possible. "This ranking
belongs to the faculty, staff and volunteers whose work has
made Mott a top-notch hospital for children from Michigan and
around the country," he said at the time. Medical School
Dean Allen S. Lichter, M.D., pointed out that U-M Mott "is
one of only two comprehensive children's hospitals in the state
and, as such, has the special responsibility to be available
to care for complex problems that children all over Michigan
encounter. We do the job very well, and we're pleased that others
recognize us for that expertise."
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Tyler White with Child Life specialist
Lisa Engbrecht. Photo: Bill Wood
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But Tyler White isn't thinking about rankings.The six-year-old
Belleville boy is playing Go Fish with his buddy Rachel Standifer
(a Child Life specialist) in the U-M Comprehensive Cancer Center,
his I.V. standing next to him. He shyly lifts his shirt to show
a visitor his Broviac, the tube through which he is receiving
a blood transfusion for his leukemia, which was diagnosed just
after Christmas of last year.
The Cancer Center's Pediatric Infusion Area is a cheerful
place with a high, vaulted ceiling and curved windows. Sunlight
pours down upon play stations covered with games and toys.
While Mott is a separate hospital, the boundaries blur: Mott's
pediatric oncology services are part of the Cancer Center
— it's all about taking care of sick children. Many of the
kids who come to the U-M Cancer Center for outpatient chemotherapy
and transfusions have spent time at Mott recently. Some will
again.
Tyler leaves his game and goes over to see a friend who has
just arrived. The boys stare at each other shyly. Nikki, a
cool preteen with flashy light blue fingernails and a killer
smile, pulls her I.V. pole into a cozy alcove and sits down
at a computer. She's exploring StarBright, a computer network
created by film director Steven Spielberg for kids in hospitals.
Once she's registered online, she can cruise hundreds of approved
Web sites and chat with kids from across the country — or
even on the next floor at Mott. A tiny camera even allows
for video conferencing.
"I'll be here at least four more hours," she says,
rolling her eyes, then turns back to the monitor.
Around the center of the room are satellite stations where
people of all ages are receiving transfusions or chemotherapy.
Some knit, read, chat or watch TV.
For nearly 80 years, the U-M Mott Child and Family Life Department
has devoted its resources to easing and normalizing the hospital
experience for children through the use of activity rooms,
bedside play, schooling for young patients, art and music
exploration, emotional support, visits by friendly dogs and
much more. In fact, Mott's exemplary Child Life program —
the first in the country when it began in 1922 — was one of
the prime reasons for the Hospital's sterling Child magazine
rating.
Lisa Engbrecht is a Child Life specialist stationed in the
Cancer Center. With her curly red hair, gentle voice and ready
smile, she could put anyone at ease. That's her job. She gestures
around the room. "You don't see children with illnesses;
you see children who are doing children's activities and just
happen to be getting treatment at the same time. Often, when
it's time to go, kids don't want to leave."
Tyler's mom Heather stops doing an Internet search for sports
equipment to talk about what the Child Life program has meant
to her family during a difficult time.
"There've been times when he hasn't been able to go anyplace
but here," she says. "His immune system was so weak,
even a common cold would be dangerous. So every Friday he
would come here for treatment, play with friends, whatever
he wanted to do. When Lisa was gone (for a pregnancy-related
medical leave) he was worried that she got what he had. He
was real glad when she came back. I mean, when they said
'playroom,' I never expected this — people who actually sit
down and play with him! He likes consistency; that's the
way we raised him. He likes to come here and have the same
few people take care of him. They make him feel comfortable,
and they do way more than what is needed."
She recalls Tyler's first visits to Mott. "There were
dolls with I.V. lines and he could flush out the lines, draw
blood, and understand what is happening to him. They explain
in words a six-year-old can understand." A Child Life staff
member is planning to visit Tyler's school in the fall, to help
his classmates understand about Tyler's leukemia.
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Child Life Specialists Devyn Baker and
Theresa Foster. Photo: DC Goings
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Back in Mott, the 7th floor activity room up in hematology/oncology
is a busy, cheerful place. Two girls sit at a table drawing
while a boombox blasts the "Wide Open Spaces" of the
Dixie Chicks. There's a guitar, keyboard, paint table, computers,
and a friendly guy named Devyn Baker who, with his shaved head,
small hoop earrings and jeans looks more rock star than recreational
therapist. There's a story behind the head.
"I did it because a girl on the floor was losing her
hair. I had a bet with some boys that if they could beat me
at hallway hockey, they could shave my head. They lost. I
made sure of it!" he laughs. "I was not going to
shave my head. Then the girl — she was 20 at this time — started
losing her hair and asked if I would go bald with her. So
for her 21st birthday we shaved our heads. The little guys
I had the bet with lathered me up to shave, but I wouldn't
trust them with the razor."
Baker's philosophical when it comes to the paradox inherent
in his work: celebrating life, creating fun for kids, but also
dealing with loss when a patient dies. "The staff really
pulls together when there's a loss," he says. "I also
eat a lot of Little Debbie snacks."
When he's not in the activity room, Baker, like the rest of
the Child Life specialists, brings the room to children's
bedsides when they're too sick — or sometimes too scared,
or simply unwilling — to leave their rooms.
Child Life even sponsors an in-house music consultant, renowned
Michigan composer and performer (and R.N.) Dianne Baker (no
relation to Devyn), who visits kids with her guitar and gets
them singing, even writing their own songs.
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Artist Adrienne Rudolph
Photo: DC Goings
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Adrienne Rudolph, Mott's artist-in-residence (and the force
behind the Seurat collaboration) keeps the ideas coming. When
she's not devising projects to do with patients, she's creating
art for them. Walk any hallway in the hospital and the doors
to patient rooms are decorated with upbeat, painted posters
depicting the young people inside. She's also officially responsible
for all recreational head-painting for patients who've lost
their hair (maize and blue for one young Wolverine fan). Casts,
too, make convenient and appreciated canvases; she's even
painted on the tiny casts of premature babies. Rudolph's work
can also be seen in a 7th-floor treatment room — not exactly
a favored destination for most kids. What could be a bleak
and scary environment is softened with a wall-sized mural
of a bucolic meadow filled with 33 different animals that
children can focus on. Distraction is an often-used word at
Mott.
"It's almost primary; children are easily distracted and
art captivates them," Rudolph says. "It's wonderful
in the treatment room. We turn the art into a game."
Rudolph, a former painter, began as a volunteer at Mott nine
years ago. She's now a full-time activities therapist who is
daily amazed by the power of art to ease children through difficult
times.
"A lot of pain is anticipation and anxiety. If you can
distract a child and relieve that anxiety, the actual pain
becomes secondary — the child is not expecting it, he's not
traumatized. Whereas a poke might capture his attention 100
percent, if it's off in the background, he might just say
'ouch' and that's the end of it."
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Savanna Falls with her mom, Cassandra
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But hospitals are more than just environments to be humanized
with color and compassion. At the core of this place is leading-edge
medicine and fascinating research, and it's distraction of
a different kind that is the metier of Steven Buchman, M.D.
He's currently in the process of performing distraction osteogenesis
— a jaw-lengthening procedure — on two-year-old Savanna Falls,
a blindingly blonde little girl born with Pierre Robin Sequence,
named for a French physician who first reported the combination
of small lower jaw, cleft palate and tongue displacement in
1923. Savanna's parents, American missionaries living in a
remote Venezuelan village, initially had no idea something
was wrong. Said Savanna's mom, Cassandra Falls, "The
night after she was born we were sitting down to dinner and
I had her cradled in my arms — you know, the way you hold
a baby — and she turned blue. I flipped her up and she was
fine
the next morning
we saw blood-stained mucous coming out of her nose and mouth.
Within 24 hours of her birth we were on a plane to Caracas."
Doctors at the hospital there diagnosed PRS. Children born
with the syndrome have a lower jaw that is either small in size
(micrognathia) or set back from the upper jaw (retrognathia).
As a result, the tongue tends to be displaced back towards the
throat, where it can obstruct the airway (glossoptosis). Most
infants, but not all, will also have a cleft palate. These babies
struggle terrifically to breathe and eat but with surgery can
grow to live completely normal lives.
A church member arranged for a Life Flight to transport the
family to Philadelphia, where Savanna received a feeding tube
and the family took time to regroup and find the best place
to settle. When the Fallses were offered teaching positions
at a Bible college in Jackson, they jumped at the chance. "Our
plastic surgeon told us, 'If you take the job in Jackson, you
can go to Mott Hospital and work with Dr. Buchman.' So really,
we picked our jobs based on Mott and the availability of good
service for our child."
Distraction osteogenesis of the jaw is a procedure in which
the jawbone is broken, then a series of pins and rods is surgically
implanted into the separated bones. A screw mechanism allows
the bones to be slowly separated — a tiny bit every day —
until new bone is formed between the edges and the jaw is
lengthened to its correct size. Little Savanna seems quite
unconcerned by the metal posts and screws that surround her
jaw which, for now, juts forward from her face. Quite intentionally,
Buchman has overcorrected the chin; when the framework is
removed, a bit of retraction is to be expected. Savanna is
also expected to "grow into" her new chin rather
than be subjected to subsequent surgeries. When the process
is completed, he will perform another surgery to close her
palate.
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Steven Buchman
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Says Cassandra Falls, "Dr. Buchman knows his stuff. You
don't get to work at Mott because you have a diploma and just
show up! What's neat is the teamwork that it takes to get
this surgery to come together. There are six different teams:
ear, nose and throat, a speech pathologist, the gastroenterologist
people, the plastics team with Dr. Buchman, sleep study people
— that's neurology — respiratory people when she's in the
hospital
and
Katherine Kelly, the orthodontist and dentist — she's one of
the most personable people I've ever met. I was talking to
her and I got a little teary and she did too. It's all about
people with all of them."
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Karin Muraszko
Photo: Lin Goings
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The team approach is central to medical care at Mott. Because
children are growing and developing, their systems are continuously
changing — and they differ from adult systems. Or, as Karin
Muraszko, M.D., chief of Pediatric Neurosurgery, puts it: "Kids
aren't small adults." Such medical issues as blood loss,
fluid management and anesthesia are more complicated in
children, she says. The variance between children and adults
is something that physicians and nurses have to keep in
mind every time they listen to a heartbeat, palpate an abdomen
or prescribe a medication.
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Janet Gilsdorf
Photo: D.C. Goings
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Janet Gilsdorf, M.D., professor of pediatrics and communicable
diseases in the Medical School, expands on Muraszko's observations.
"Since young children can't use language to communicate,
we need to rely on non-verbal cues from our patients and on
parents' observations," she says. "Children are physiologically,
emotionally, anatomically and socially different from adults,
so we as pediatricians learn these differences and incorporate
them into our assessment and management techniques."
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James Ferrara
Photo: Marcia Ledford
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James Ferrara, M.D., professor of medicine and pediatrics
and director of the U-M Cancer Center's Bone Marrow Transplant
Program, adds that children "get sicker more quickly.
Often there isn't a lot of time to make decisions, and if
you don't get the best treatment for cancer the first time,
you may not get a second chance at a cure." Ferrara notes
that children who are bone marrow transplant patients "are
among the sickest anywhere. It takes a critical mass of multidisciplinary
talent and expertise — doctors, nurses, play therapists, pharmacists,
dieticians, radiologists, clinical laboratories — to bring
a child through this harrowing process safely.
"When I was born, children's cancers were almost universally
lethal. With new therapies, including bone marrow transplant,
we can now cure almost 75 percent of our young patients. That's
one huge leap for human-kind in a single lifetime, but it's
that last 25 percent that keeps driving us." Ferrara, who
left a tenured position at Harvard to come to U-M, did
so because
"I think this is the place where I can help do this work
the best."
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Valerie Castle
Photo: Paul Thacker
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Valerie Castle, M.D., professor and associate chair of Pediatrics
and Communicable Diseases, says, "Whenever I tell people
I'm a pediatric oncologist, the first thing they say is 'Oh,
how can you do that? It must be a terribly difficult job.' Actually,
it's probably the best job in the world." For acute lymphoblastic
leukemia, for example, Castle cites survival rates of near zero
in the 1930s and 1940s, rising to over 85 percent today. Looking
back on her "relatively short career," Castle takes
heart and hope in the major strides that have been made. At
U-M, Castle says, scientists forge unique collaborations across
disciplines, "and we're seeing our patients in the same
place we're doing our research," allowing for effective
translation to bedside treatment of childhood cancers.
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Jean Robillard
Photo: Bill Wood
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Jean Robillard, M.D., a French-Canadian originally from Montreal,
heads the Department of Pediatrics and Communicable Diseases
which oversees the complement of extraordinary pediatric medicine
and pioneering research that converges in U-M Mott Children's
Hospital. He loves talking about the great researchers and clinicians
with whom he works.
"One of our major research programs is being conducted
by Samir Hanash, a professor in the Division of Hematology
and Oncology," Robillard says. "He is looking at
determining the different genes and proteins involved in cancer
— sequencing proteins, finding genes, then finding therapies;
this is very exciting work.
"Another group, Delia Vasquez, John Barks, Faye Silverstein,
and Sheila Gahagan, are involved with the development of the
brain — the normal brain and the effect of stress during the
perinatal period on brain development. That same group is
looking at brain injury in newborns. Barks and Vasquez have
a tremendous amount of funding and what they do is starting
to be applicable to patient care. It's very important and
very timely.
"We've just recruited a physician from Germany, Dr. Friedhelm
Hildebrandt. He's a renal geneticist and has made tremendous
discoveries in multiple renal diseases. He's coming to join
a fantastic team and concentrate on his work on the genetics
of renal disease.
"Gary Freed is another major recruit in this department
— a pediatrician who is doing his research in health services.
He is looking at the distribution of care, studying the implementation
of vaccines, evaluating state programs, looking at the economic
aspects of these programs. He came here with one research
associate and now has a program with over $10 million in funding
and 25 people working for him. His program in health services
focusing on children is very unique in many respects, and
it's become one of the major programs in the country."
Robillard himself left Canada to finish his residency and
complete a research fellowship at UCLA. His mentor there,
Fred G. Smith Jr., decided to accept a chair at the University
of Iowa; Robillard moved with him and stayed 20 years. Then
Michigan called and
"I got in love with the place — the excellence of the
Medical School, the ability to collaborate. There are no departmental
barriers. What is most important is the quality of the people
— from the top on down. With this type of philosophy, I was
ready to change careers and be more of an administrator, to
get a chance to influence academic pediatrics using this position,"
a position he has held for five years.
"The University is a leader in a multitude of spheres.
When you look at the ratings of schools — business, engineering,
social work, nursing, medicine — this is unbelievable! To
have this much excellence across-the-board!"
Robillard speaks of his own attraction to the field of pediatric
medicine: "One day you may take care of a baby at 30
weeks gestation, and the same day you work with a young adult
20 years old. The huge range of physiology, that's what attracted
me — the whole aspect of development in terms of emotion,
physiology, learning. You don't see that in adults so much.
In pediatrics, the diseases we see are often reflected later
in adults. In a way, it is the fetal origin of adult disease.
You have a chance as a pediatrician to influence health later
in life — if you do good things!"
As an academic administrator, Robillard says, "The challenge
is really to find the best people, especially in pediatrics
where there is a huge demand for the best faculty and the best
scientists. There are very few people available. Because of
this, we are looking at the entire world when we try to recruit
the best people. That's why we were able to recruit Hildebrandt,
one of the best renal geneticists in the world."
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Patricia Warner
Photo: Martin Vloet
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For Patricia Warner, keeping the University of Michigan up
there with the best of the children's hospitals in the nation
associated with major academic research centers is her first
goal. "There are other wonderful children's hospitals,"
she notes, "like Children's Hospital in Detroit. But the
breadth of our research and the leading-edge clinical care that
immediately results from that research is our great strength.
"The first extracorporeal membrane oxygenation (ECMO)
with children was offered here, for instance. And we were the
first to be able to give a child ECMO while being transported
here by air. Also, our birth center is geographically and programmatically
very integrated with our Neonatal Intensive Care Unit. That's
important because when you have a high-risk delivery, the babies
often have to go into the NICU. In a freestanding hospital,
the baby has to be transported away from its mother."
Warner also believes that the atmosphere of creative caring
fostered by the Child Life program is a powerful plus. "Child
Life offers those services that truly support the children and
families, to maintain as close as possible a child's developmental
environment. Developmental play, education, pet therapy, preparing
children for operations through play therapy
and we celebrate
every holiday that can be dreamed up!"
Why does she think people choose to come here? "We really
are the state resource for special services. We also serve
a lot of out-of-state needs. People come here because we have
absolutely comprehensive services. Not only physicians but
nurses, respiratory therapists, physical therapists, pharmacists
— all have training in pediatrics. And remember, children
aren't usually hospitalized unless what they have is very
unusual, or they are very ill. People want to come where the
most research exists.
"Even though I've worked here many years, I still feel
very privileged to do my best to support the care team that
does such a great job, not only with medical sophistication,
but also with family-centered care. All our staff nurses, the
allied health people, really work as a team. I feel challenged
and excited to be able to support that."
For all the successes, for all the discovery and education
and healing, there are some very real constraints and limitations
on these doctors and researchers who come to work every day
with their eyes on a healthier future for the world's kids.
Warner takes a deep breath.
"We need a new facility because we have outgrown Mott,
both in size and in the ability to maintain and house future
technologies. We're limited. The rooms are small, and we have
very few private rooms. We believe in accommodating families,
but there's little space for that, and very little privacy."
Adds Robillard, "We have exceeded the capacity of this
building to the point where it's become extremely difficult
in the space we have to expand present programs and even more
difficult to create new programs.
"If we want to continue to be leaders in academic medicine
and in developing the next generation of pediatric academic
leaders in this country, as well as in providing the very best
care to our young patients, we need a facility that will allow
us to do this. When you have a great research and clinical facility,
then you can attract the best fellows, residents, faculty and
researchers. In the last five years, we have seen at least eight
medical centers that have built new children's hospitals or
have tremendously improved existing ones, including UCLA, the
University of Chicago, and the University of Pittsburgh."
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Jesus David Andrade Ysea with his mother,
Lizmar Ysea. Photo:
D.C. Goings
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On a cool day in August, just a few days after the break of
a two-week-long heat spell, Jesus David Andrade Ysea is doing
well, sitting up in bed, busy looking as cute as a happy 22-month-old
can look. His mother and father, both physicians in Venezuela,
are hovering over him, reading books, stroking his leg. At the
entrance of a visitor, Jesus looks a bit apprehensive and holds
out his arms to his father who soothes him with kisses and soft
words.
Just five days earlier, Jesus had an esophagus created for
him by Arnold Coran, M.D., Mott's head of Pediatric Surgery.
And in a few days more, little Jesus will begin to learn how
to eat. Television's The Learning Channel took a great interest
in the case; a camera crew taped the operation and spent hours
interviewing Jesus's family and Coran for an upcoming segment
on rare surgeries.
It's all in a day's work for the Boston-born Coran who sits
in a hospital library, unfazed by lights, microphones and
cameras.
"Jesus was born with an absence of his esophagus, called
esophageal atresia," says Coran. "It's an anomaly
that occurs in about one in 2,000 live births. He had a very
rare variant of that anomaly: a pure atresia. The distance
between the ends of the esophagus was extreme — there was
a little tissue in the neck and a tiny bit in the abdomen.
His father contacted me by email when the baby was 16 months
of age. There was nobody in South America who wanted to tackle
it."
Since Jesus's birth, his mother and father have kept him alive
with a feeding tube and by scrupulously caring for the pump
that continually suctioned his saliva, which he was unable to
swallow. Coran and his team performed the surgery to connect
the ends of Jesus's esophagus on the morning of August 10. "On
his first day in the ICU, he was quite stable," Coran says.
"This (operation) can do damage to the vocal cords, but
there was no problem." Jesus's stay in intensive care was
prolonged by two days only because of a shortage of beds on
the regular floor.
And so now, two weeks before the family is scheduled to return
home, there's a new hurdle to cross. Often, a child with a condition
necessitating long-term feeding via tube, develops an aversion
to food. Indeed, Jesus's father says, in soft and halting English,
that he and his wife have never eaten in front of their son.
In the time that remains before the family's departure, Mott
pediatric occupational therapists will slowly begin to introduce
the boy to the joys of juice and rice and cookies.
A dangerously sick child, a trip halfway around the world,
major surgery on a tiny and treasured boy. What has this been
like for these young parents? "We had faith that the surgery
would be OK," says Heberto Andrade. "It was a surprise
when we arrived. This hospital, the people here make you feel
like home. They have been doing great work. I want to give thanks
to the people here. We were afraid, but now we are so happy.
He's playing, he's laughing, he's a strong boy." Such triumphs
keep Coran going at a pace he couldn't have imagined when he
was younger. "I love to go to work," he says. "I'm
going to be 64 next April and I'm as excited about what I do
here as I was 29 years ago."
"At Thanksgiving," Heather White recalls, "Tyler
started complaining of his knee hurting and the doctor couldn't
see anything, but there was fluid there. Then a couple of
weeks later his shoulder was hurting and you could see the
swelling; it looked pretty weird. We took him back and they
said 'If he develops a fever take him to the ER, don't call,
just go.' On December 28 he ran a fever. They ran some tests
and at 2:00 in the morning came in and said, 'Well, it's either
a tumor or leukemia.' We were half-asleep — what do you do?
What do you say? You just stand there dumbfounded. They said
'You need to be at Mott Children's Hospital in the morning.
Go home and get some sleep.' As if we could sleep
"
And thus began a certain kind of nightmare for the White family
of Belleville: stay-at-home mom Heather; attorney Thomas; and
kids Amanda, 12, Zachary, 9, and Tyler, 6. The months since
that winter night have been a whirling blur of hospital stays,
invasive procedures, a crash course in cancer, and a whole lot
of hope.
At Mott early the next morning, the Whites met Jim Williams,
M.D., clinical assistant professor of pediatrics and communicable
diseases, and an immediate bond was formed. After an examination
of Tyler's bone marrow, Williams visited the family, now joined
by grandparents and friends, to discuss the diagnosis: acute
lymphoblastic leukemia.
Recalls Heather White, "I remember he said, 'If you have
to get leukemia, this is the one to get.' With chemo alone,
there's almost a 90 percent cure rate. And my older son Zachary
wanted to know everything. Dr. Williams explained things in
a way he could understand. We were relieved-just knowing the
problem helped. It didn't make it go away, but we knew what
we were fighting. He was in the hospital for five days. His
first clinic visit (for chemotherapy) was on January 5. They
don't waste time. It's six months of intense treatment, then
three years of maintenance."
From the beginning, the relationship between doctor and patient
has been a lifeline in more than the expected ways. Says Heather
White, "The man is fabulous. I haven't seen a kid in
that clinic who doesn't like him. Tyler runs to him and jumps
in his arms. He thinks Dr. Williams is the greatest thing
in the world. He takes his job very seriously. He finds the
positive, even if it's very small, and he gets down on a
kid's level. He can talk to a six-year-old and make a six-year-old
understand. Ty loves him. He'll go off with him and couldn't
care less if I'm in the room. Anyone else, forget it — I
have to be there."
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Jim Williams and Tyler White
Photo: Bill Wood
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Tyler White has also forged a special friendship with his nurse,
Marcia Louisell-McFawn. He doesn't like any of the poking, but
if she's there, it's easier. And for spinal taps, his buddy,
nurse Laura Siggens, has to be on hand. Tyler and Laura share
a passion: country singer Reba McIntyre. "He loves Reba,"
smiles Heather. "He calls her 'his woman.' When he has
hair it's the same color as hers." And when the Whites
went to a McIntyre concert last summer, Laura went along too.
Tyler's nurses also attended Friend Day at the Whites' church.
Mostly, Tyler comes to the Cancer Center for outpatient chemotherapy
on Friday mornings, but when fevers cause him to be admitted
to Mott he takes up residence on the 7th floor and, when he
feels up to it, plays hallway hockey with Devyn Baker, gets
visits from friendly dogs, or gets propelled at breakneck speed
around the hospital in a stroller that's gussied-up to look
like a car. One nurse rigged up his I.V. on the back of a tricycle
so he could ride around on his own, untethered. Says his mother,
"They should get horns; I don't know how many people he's
run over."
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LaTesha Tigner Photo:
Bill Wood
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At the other end of childhood is 22-year-old LaTesha Tigner.
As Tyler White and his buddies tackle puzzles and popcorn out
in the playroom, she's snuggled into a chair-bed, under a blanket.
"I'm waiting for my blood," she smiles sleepily.
Battling sickle cell anemia, LaTesha has been coming to Mott
for a long, long time. "I had a major stroke when I was
six," she says. "It paralyzed my whole body for three
to four months."
With time and treatment, LaTesha is getting around just fine
now, despite arthritis in her knees and a susceptibility to
migraines. A recent graduate of Ypsilanti High School, she's
planning to be a pediatrician. She, too, is a Williams fan.
"I just love Dr. Williams. He's my favorite doctor. He
knows what I go through. I just love him
"
And U-M Mott Hospital and her treatment here? She lies back
and smiles. "It's a part of life
"
It is a part of life, too, for the hundreds of dedicated U-M
Mott men and women who, like each of the countless dots of
brilliant color in the Seurat tapestry, work their individual
wonders every day in an incredible collective effort to make
sick children from Michigan and beyond well again — or maybe
even for the very first time.
Also:
A Rare Surgery Presents a Special Challenge
The 10 Best Children's Hospital
Progress for Preemies
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