Miracle Weekend June 2 & 3 - urmc.rochester.edu · longest hug to the surgeon who has made her baby whole. Many people must come together for these miracles to happen—doctors, ...

G O L I S A N O C H I L D R E N ’ S H O S P I T A L A T S T R O N G

U n i v e r s i t y o f R o c h e s t e r M e d i c a l C e n t e rF E AT U R E DS T O R I E S :

P A R T N E R I N G F O R S T R O N G K I D S Spring 2007

Miracle Weekend June 2 & 3A teenager shakes his coma, opening hiseyes for the first time in three months.

The day before Halloween, atoddler’s chest scans show that his heartis healthy enough for him to go trick-or-treating.

A second-grader is only months shyof being declared “cancer-free.”

A 1-lb. preemie grows strongenough to head home — on his due date.

A grateful mom gives the world’slongest hug to the surgeon who hasmade her baby whole.

Many people must come togetherfor these miracles to happen — doctors,nurses, families and friends. Some ofthe most important people are ourdonors. From our largest and mostfamous, like Tom Golisano, who gave ahistoric $14 million gift to the hospital, Continued on page 6

More fevers with chronic stress 3

Connecting violence victims to services 4

Pediatric hypertension & lipid clinic 5

Miracle Kid profiles 7

CMN sponsors 13

to our youngest donors and their incred-ibly heartfelt donations, like that ofMichael Ramirez, who raised $15 dollarsat a lemonade stand last September —donors like you power our miracles.Without your loyal backing, we wouldn’tbe able to provide patients with state-of-the-art equipment, like new Giraffe bedisolettes that help premature babies likeMiracle Kid Jude Bryne grow strong,or new facilities, like the William andMildred Levine Pediatric Surgical Suite,that proved life-saving for Miracle KidTristan Lewis. With your help, we havethe technology and the expert staff tohelp children right here in Rochester,close to home.

The first weekend in June — orMiracle Weekend, as we’ve dubbed it —

Thomas Golisano at a reception for formerPediatrician-in-chief,Elizabeth R. McAnarney, M.D.

2

Dear Friends —

Not a day goes by without one or more of our Golisano

Children’s Hospital at Strong family members achieving

major honors in the local, regional, or national arena.

arenas, and our sister institutionsaround the globe. That is why wejoyously joined with you at the Red TieGala for the Ronald McDonald House.That is why we join with you indemanding of our local, state, andFederal officials the best possiblefunding for our children, our aged, andour families. That is why we join withyou in educating the children andadolescents and their parents aboutsmoking cessation, optimal nutritionand immunizations.

And that is why we ask you to joinwith us. We need your help in endowingour novel programs and promisingfaculty, expanding and upgrading ourinpatient and outpatient facilities, andluring the best and the brightest physi-cians, nurses, social workers, therapists,and students to upstate New York. ThisOctober, we will rejoice at our 20thannual Gala — a celebration that marks,not an end, but a new, bright beginning!

Thanks to you all for always being therefor our kids and their families —including our five Miracle Kids andtheir families, whose stories comprisethe bulk of this issue.

Your support keeps generating goodnews of triumph through care and cure.Again, thank you, and best regards.

Yours truly,Nina F. Schor, M.D., Ph.D.Pediatrician-in-chief

Board of DirectorsHoward Jacobson, Chair *Al Chesonis, Vice-Chair *Dave Christa, Vice-Chair*Robert G. Jacobson, Vice-Chair*Mark Siewert, Vice-Chair *Michael Amalfi*Joseph L. Carbone, D.P.M.Jeffery DavisJohn L. DiMarco IIWanda Edgcomb Harvey B. ErdleTimothy FournierRoger B. Friedlander Jay W. GelbJohn GlynnHeather A. GoodbodyMike GoonanDeborah Haen*Michael HaymesArnold KlinskyTodd LevineKim McCluskiBrian PasleyJames G. Vazzana

FacultyRichard E. Kreipe, M.D.Thomas K. McInerny, M.D.Jeffrey Rubenstein, M.D.

HonoraryJeffrey D. BlanchardJudy ColumbusDiane R. DonigerJohn L. Green, M.D.Richard A. Insel, M.D.Joseph E. KlarbergDonald P. McNelly

Ex-OfficioBradford C. Berk, M.D., Ph.D.Steven I. GoldsteinFrank InterlichiaDouglas PhillipsR. Scott Rasmussen *Nina Schor, M.D., Ph.D.*Elsa Steo

* Executive Committee

In the past few weeks, we have cele-brated a new Robert Wood JohnsonFoundation Fellow, several newNational Institutes of Health grantawardees, a Rochester Business JournalHealthcare Achievement Awardshonoree, the Mentor of the Yearawardee from the Eastern Society forPediatric Research, and a ranking of 20 for our Department of Pediatricsfrom among the approximately 150 suchdepartments nationally ranked by U.S.News and World Report. We havesent welcome letters to 15 prospectivePediatrics and eight prospectiveInternal Medicine-Pediatrics residentsfrom around the country — indeed,around the world —who will join ourhouse staff this July. We have hostedleading scientists from around thecountry in our Pediatric Biomedical andTranslational Research Seminar Series.Exciting times; wonderful opportunities;and a heavy responsibility.

The responsibility involves the stewardship that must accompany eachexciting new achievement. We mustsustain and even surpass our currentlevel of excellence in provision of careto the children and families who entrusttheir health and well-being to us. Wemust nurture and mentor the new physi-cians who join us this summer. We mustkeep our physician-scientists motivated,productive, and supported both fiscallyand intellectually in this leanest of timesfor biomedical research. And we can dothis only through our partnership withour lay community, our colleagues inthe medical, service, and educational

3

A physician-psychologist team atGolisano Children’s Hospital at Strongfound that children whose parents andfamilies suffer ongoing stress have morefevers with illness than other children,suggesting an association betweenfamily stress and susceptibility to infec-tious diseases.

Published recently in the Archivesof Pediatric and Adolescent Medicine,the study also uncovered somethingunforeseen — that children’s naturalkiller cell function, part of the body’sfirst line of immune defense, actuallyincreases under chronic stress, unlike inadults, in whom it does the exact oppo-site, or decreases.

“These findings are somewhatsurprising to me but also excitingbecause they show us possible newavenues for improving children’shealth,” said Mary Caserta, M.D.,associate professor of Pediatrics in thedivision of Pediatric Infectious Diseases

at Golisano Children’s Hospital atStrong.

Caserta undertook the study withcollaborator Peter Wyman, Ph.D., asso-ciate professor of Psychiatry at theUniversity of Rochester. The study isone of the few that have examined theeffects of stress on children’s immunefunction.

The more unexpected finding of thestudy, that children’s natural killer cellfunction increases under chronic stress,remains to be explained. Natural killercells are part of the immune system thatexists before a new germ is introducedand serve as the first, generic line ofdefense for the body until the immunesystem adapts to find better-tuned waysto fend off a specific bacteria or virus.

“It may have something to do withthe fact that children’s immune systemsare still developing,” Caserta said. “Or maybe they’re compensating for adefect someplace else. More research is

needed to figure out why.“Once we understand these connec-

tions we can design interventions thatlower family stress, or help families tobetter manage stress in their interactions— and lead to healthier kids,” she said.

Study shows fevers increase with chronic stress

Otherresearch* Carl D’Angio, M.D., associateprofessor of Pediatrics atGolisano Children’s Hospital,recently published a study thatshowed vaccines for measles-mumps-rubella and varicella, orchicken pox, are effective inextremely preterm infants, eventhough preemies’ immunesystems are not as developed asfull-term babies. This confirms along-held assumption by pedia-tricians and neonatologistsacross the country.

* Sanjiv Amin, M.D., assistantprofessor of Pediatrics atGolisano Children’s Hospital,recently published a study thatshowed preemies between 28and 32 weeks were not harmedby multiple treatments that areno longer used to help theirlungs mature before birth. Eventhough previous observationalstudies suggested that repeatedcourses of steroids in the wombmay result in brain damage, thisstudy shows that the babies’brains are virtually unaffected.

4

Too many teens were coming throughthe doors of the emergency room atGolisano Children’s Hospital at Strongwith gun shot and stab wounds, so MarkGestring, M.D., trauma surgeon, and Jeff

Program connects violence victims to servicesRideout, social worker, decided tostretch beyond their regular roles andhelp the teens outside the hospital.

Now, every pediatric victim ofviolence who passes through the emer-

gency room is evaluated for more thanjust medical concerns. The team identi-fies immediate and long-term issues thatmay have put them in the position ofbeing injured, such as the need forprotection or housing. But the evalua-tion doesn’t stop there — contributingfactors are also considered, such as anundiagnosed psychological problem orissues around supervision.

“We want to make sure that whenwe send these children home they aren’tin danger,” Gestring said. “We want toaddress all safety concerns so they don’tcome back through our doors again.”

Once the issues are identified, theteam sets into motion a series of refer-rals to outside agencies andgovernmental agencies to ensure theteens get the help they need. Among the key partners in the program arePathways to Peace, PAVE (PartnersAgainst Violence Everywhere),Rochester General Hospital PediatricEmergency Department, Camp GoodDays and Special Times, the Mayor’sOffice, Rochester Police Departmentand Monroe County Child ProtectiveServices. With the help of these organi-zations, the program creates a safety net to prevent another violent injury.

This program is only part of anincreasing community response toaddress the issue of violence in ourcommunity. Still in its infancy, theprogram will continue to change to meet the unique needs of victims, butthe primary goal will be to stop victimsfrom being revictimized or becomingperpetrators. Additional resources arenow being mobilized to help the entirefamily.

“In a couple cases, we’ve actuallyhad to help a child change schooldistricts and the families do not returnto their homes,” Rideout said. “We’ll dowhatever we can to keep them safe.”

11th Annual Golisano Children’s Hospital at Strong

stroll for strong kids

SAVE

the

DATE presented by

Join us for our 11th Anniversary Celebration of this family-fun fundraising walk to benefit Golisano Children’s Hospital at Strong

Children’s activities, costumed characters and concert by Gary the Happy Pirate • Lunch provided by Subway for all participants • Prizes awarded to high fundraisers

For information call 585–273–5948 or e-mail us [email protected]. Beginning April 1,registration forms will be available on-line at www.gchas.org

SATURDAY, JUNE 2, 2007GENESEE VALLEY PARK

11

rainorshine

We want to make sure

that when we send

these children home

they aren’t in

danger…We want

to address all safety

concerns so they don’t

come back through

our doors again.

NIX 100.5 RADIOTHON

As more children are diagnosed withhigh blood pressure or unhealthycholesterol levels, the need for special-ized services has grown. That’s whyGolisano Children’s Hospital hasmeshed its hypertension and lipidclinics to provide a more integrated andconvenient way for families to seek care for their children with high bloodpressure, high cholesterol, or both.

“Although the causes and healtheffects of hypertension and high choles-terol can be very different, thediagnostic tools and treatments aresimilar,” said Marc Lande, M.D.,a pediatric nephrologist with GolisanoChildren’s Hospital at Strong and anexpert in pediatric hypertension. “Bycombining our clinics, families can cutdown on the number of appointmentsthey need to make.”

Left untreated, hypertension andhigh cholesterol in children can lead tocoronary artery disease, heart attack orstroke in adulthood.

All patients of the combined clinicare seen in the Children’s Heart Center,where they can receive echocardio-grams, 24-hour ambulatory bloodpressure monitoring and other special-ized tests not generally available in mostpediatric and family medicine offices.

Often hypertension and highcholesterol in young children are familytraits, but a growing number of casesare the results of lifestyle.

“The rise in the percentage of chil-dren with hypertension parallels the risein obesity,” Lande said. “About 10 percentof overweight kids have hypertension.”

There has also been an increase inchildren diagnosed with high choles-terol, which can be partially attributedto parents getting screened earlier. If parents’ blood tests show significantproblems, their children are often tested so that issues can be addressed in childhood when it’s easier to make adifference in habits and long-term health.

“The first step is always to try to

make changes in diet and exercise ifproblems are identified,” said KathleenMcGrath, P.N.P. “Pediatricians andfamily practitioners often try this routebefore referring to us.”

As the pediatric nurse practitionerwith the clinic, McGrath counsels fami-lies of children with cholesterol orblood pressure problems to begin withsmall changes, such as taking walksseveral times a week or limiting transfat, saturated fat, juice and soda in theirdiet. If changes in exercise and dietaryhabits don’t improve the conditions,

medications may be considered.“You want to educate children and

their families as much as possible, thatwhat they eat does matter, that whetherthey exercise does matter,” said RogerVermilion, M.D., pediatric cardiologistwith the clinic and the Children’s HeartCenter. “It’s much easier to make thesechanges as a child than as an adult.”

To learn more about the PediatricHypertension and Lipid Clinic, pleasecall the Children’s Heart Center at (585)275-6108.

Clinic treats kids with adult-like health issues

Left untreated, hypertension and high choles-

terol in children can lead to coronary artery

disease, heart attack or stroke in adulthood.…

Often hypertension and high cholesterol in

young children are family traits, but a growing

number of cases are the results of lifestyle.

5

Children’s Miracle Network Telethonto benefitGolisano Children’s Hospital at Strong

6

brings us the chance to celebrate thegreat strides we’ve made together. We select a handful of patients withgripping stories and are delighted tointroduce them to you as our MiracleKids. Their candid accounts representthose of thousands of other childrentreated at Golisano Children’s Hospitalevery year. It’s your constant supportthat helps make these miracles happen.

Check your calendar and be sure tomark down these dates: June 2 and 3 forthe 24th annual telethon and 11th annualStroll for Strong Kids.

Children’s Miracle Network Telethon on 10NBCProudly producing our 24th annual CMN Telethon, 10NBC will broadcastlive from the Strong Memorial Hospitallobby. The telethon serves as a platformfor parents and children, including the families of our five Miracle Kids,to share their stories of trials turned

triumph at Golisano Children’s Hospitalat Strong.

This year’s telethon will be heldSaturday, June 2, from 4 to 8 p.m., andSunday, June 3, 7 to 10 p.m. To make a gift during the event, please dial (585)241-KIDS, or log on to www.gchas.org.

Stroll for Strong KidsOur 11th annual Stroll for Strong Kidspromises a surefire way to kick-startyour Saturday morning with loads offamily fun—clowns, inflatable toys,special characters, and a scenic two-mile walk, topped off with a free lunchcourtesy of Subway and a dance-worthyconcert by Gary the Happy Pirate. Helpus reach our goal of 2,200 walkersraising $250,000.

The fun begins with registration at9 a.m. on Saturday, June 2. For moreinformation on how you or a team offriends can register — or on how tosupport your favorite Stroll team—visitwww.gchas.org or call (585) 273-5948.

June 2 and 3on 10NBC

Golisano Children’s Hospital atStrong is the only hospital in theRochester and Finger Lakesregion devoted solely to thecare of children. All donationsmade through the Telethon stayhere to help children sufferingfrom a variety of illnesses andinjuries, and support many proj-ects crucial for our children.

4–8 p.m. Saturday, June 27–10 p.m. Sunday, June 3

Continued from cover

Miracle Weekend packedwith fun activitiesJune 21

June 24to

Tristan Lewis

7

“The first time I saw him, he wassurrounded by a crowd of doctors, and histummy was so large,” Bristol said. “As itturned out, he had more of the VATERsymptoms than Dr. Pegoli had suspected.I was instantly thankful for all the conver-sations we’d had in advance.”

Tristan immediately underwent a six-hour surgery to separate the twotubes (tracheoesophageal fistula), whichsaved his life. He then spent the betterpart of two months in the NeonatalIntensive Care Unit recuperating fromsurgeries including a colostomy, agastrostomy, and creating a spit fistula(a hole in his neck that would helpmucus to drain to the outside).

He went home for two months, onlyto return to the children’s hospital formore surgeries, including one to constructhim a new anus, and another to recon-struct his esophagus (using a part of hiscolon) and close his colostomy.

“That whole time, Tristan kept uson our toes,” Bristol said. “We wouldprogress his feeding from IV and elec-trolytes to formula, and then he’d vomit,which was upsetting, because his

This past September, five months alongin the pregnancy of their son, Tristan,Cheryl Bristol and Marc Lewis receivedobstetric test results that piqued doctors’concern.

“Only halfway along, imaging tech-niques were already able to look insideme, to look inside Tristan, and registerspots on his bowels that posed threat ofblockage,” Bristol said. “And immedi-ately, we were encouraged to begintalking with a surgeon — just as aprecaution.”

That’s when the couple met WalterPegoli Jr., M.D., surgeon-in-chief atGolisano Children’s Hospital, whowarned them that there was risk that theentire line of Tristan’s “plumbing”—from top to bottom—might haveproblems. Tristan would likely sufferfrom any number of non-random birthanomalies recognized as VATERsyndrome (an acronym representing:vertebral problems; imperforate anus,where the rectum doesn’t open to theoutside of the body; tracheoesophagealfistula, or a persistent connection of thewindpipe and feeding tube; and renalanomalies). How many of these anom-alies Tristan would experience, and towhat extent, wouldn’t be known until he was born.

So, at a time when most expectantparents would be putting finishingtouches on their home nurseries, Bristoland Lewis were talking through thewhat-if scenarios with Pegoli. Theywould need to give consent for anynecessary surgeries, perhaps almostimmediately after Tristan was born,and they wanted to be ready withthought-out answers.

It was time well spent. WhenTristan was delivered, doctors noticedright away that his anus did not open tothe outside, and that his belly lookedswollen—the result of his feeding andbreathing tubes being joined together,causing him to suck air past his lungsand into his stomach.

surgeries hadn’t yet healed and we’dhave to start the feeding progression allover again. Another time, he pulled outhis gastrostomy tube, and we had tohave it reinserted. Nothing was simple,even on the more straight-forward visits.The last one turned into a 22-day stay,because of these little, inevitablesetbacks.”

But at last, the lineup of surgeries— so many, Bristol says, that she keepscount and has almost run out of fingers— came to an end.

“After Tristan’s final surgery, I gaveDr. Pegoli the biggest hug; I didn’t wantto let go,” she said. “How do you thanka man who has lifted such a weight offyour shoulder, who has tended to a childwith so many needs and given themcomplete and total healing, a future?”

The horizon looks hopeful forTristan. He’s a smart 14-month-old, wholikes to play copy-cat; he’s learning tocrawl and, after a long wait, is eatingand drinking with his mouth, just theway he should.

Best of all, he’s healthy.And, he’s home.

Tristan Lewis:Ready for a game plan, while still in the womb

MIRACLE KIDS

8

To say that 17-year-old Cal Livingston isfond of the great outdoors would be anunderstatement. He grew up riding dirtbikes, jet skis and snowmobiles, not tomention, camping and hunting. And as far as high school sports areconcerned, Cal, a Geneseo Central tri-athlete, ate, slept and drank baseball,hockey (his favorite) and football.

That’s why, last December, when he began experiencing flu-like musclesoreness after a hockey game, no onethought too much of it.

“Like a tough sport, he hadmustered his game strength whileadmittedly feeling a little under theweather,” his mother, Micki Livingston,said. “He even scored the winning goal.”

But when Cal’s condition worsened,she and her husband, Dave, soon sensedthat something more serious was at play.Doctors in Geneseo sent Cal toGolisano Children’s Hospital at Strong.

In Rochester, testafter test shed little lighton the mysterious illnessthat had struck withoutwarning, and Cal’s healthwas slipping so fast andhis breathing had becomeso labored that doctorsfeared it might sap hismuch-needed strength. To conserve it, he wassedated and placed on a ventilator.

Soon, enough cluescame together. Cal wasdiagnosed with macrophage activationsyndrome, a rare inflammatory condi-tion related to his otherwise low-lyingjuvenile rheumatoid arthritis, whichhadn’t bothered him much since hisinitial diagnosis after experiencing sorejoints as a 7-year-old.

“His body was attacking itself,”

Livingston said. Cal’s condition grew

worse with time—bringing multiple organsystem failures, andcomplications that causedthe need for more than 15skin grafting procedures,which were performed byChristopher Lentz, M.D.,part of GolisanoChildren’s Hospital’steam of surgeons whohandles complex wounds,burns and critical care.

Cal and his family fought for hislife. His parents stayed close by, takingturns staying in his room, or onlyminutes above it in the hospital’sRonald McDonald “House within theHospital.”

People began rallying for Cal backat home. Hundreds of t-shirts weremade that bore a “Cal” logo across the front, and people could be spottedwearing them all over Geneseo. Hockeyplayers, even on opposing teams, wouldroutinely gather at the rink’s center topray for Cal’s health after games. Friends even formed a group called “Friends of Cal” that held fundraisersand garnered support for Cal inGeneseo. In February—and after Calhad spent nearly three months in thehospital in a medically-induced coma—the Friends organized a special benefit.In the middle of it, the Livingstons sentan urgent message to be read to all inattendance: that very day, Cal hadopened his eyes!

Celebration broke out; Cal hadmissed a few months’ time, his hockeyseason and Christmas, but this was thefirst of many miracles for the Livingstonfamily.

Heartened, they pressed on. Cal,now awake, quickly developed afriendly rapport with his nurses.

“They’re the first line in anyContinued on page 12

Cal Livingston: After a year-long journey,this champ heads home

Cal Livingston’s family is happy to have him home—finally!

MIRACLE KIDS

9

Continued on page 12

Timothy Eaton is known for sporting a winning smile — even in the toughtimes.

Five years ago, July brought 3-year-oldTimothy Eaton hugs and sunshine,thanks to a family reunion in Tennessee.It also introduced big words, like“leukemia” and “chemotherapy,” intohis growing vocabulary.

Upon returning from the trip downsouth, Timothy, the youngest of threeEaton boys, was running a temperatureand not feeling well. His pediatricianinitially thought it was hand, foot andmouth disease, a common viral illnessamong kids his age that would likelyjust run its course.

But it didn’t. It ran, ran and ransome more, and soon led to vomiting.“At that point, I brought him back to seethe doctor again, and they took fingerpricks, but didn’t like what they saw,”said Timothy’s mom, Michele Eaton.

The doctor’s office asked foranother finger on the other hand.

“And when that brought troublingresults, too, they told us that it might beleukemia and that my husband, John,and I were to pack a bag and headstraight to Golisano Children’s Hospitalat Strong,” Eaton said.

In Strong’s pediatric emergencydepartment, the Eatons met Yesenia“Jessica” Ocampo, a child life specialistwho brought coloring books, toys andgames that would help pass time whileTimothy waited for yet more blooddraws. Soon, Timothy was broughtupstairs, where a bone marrow testconfirmed that yes, he did haveleukemia — ALL, or acute lymphoblasticleukemia, which affects white bloodcells that normally fight off infection.Fortunately, this once-fatal disease isnow quite curable, and more fortunatelystill, it had not spread to Timothy’sspinal fluid.

“Our doctors were ready to field allour questions and talk about treatment,medicines and routines, but we weren’tready for answers just yet,” Eaton

remembered. “It was still very raw.”Respecting that, doctors continued

to treat Timothy and only versed theEatons in the absolute essentials. Therest could wait until they were ready.

“A diagnosis of leukemia is a timeof crisis for the whole family, presentingan enormous amount of information forthe whole family to take in,” saidBarbara Asselin, M.D., one of Timothy’spediatric oncologists. “But, in time, theEatons stepped up to the challenge withdetermination, embracing the new treat-ments and routines with amazing

strength of spirit. Timothy, especially;there’s nothing that can make your daylike Timothy’s winning smiles!”Timothy began receiving platelets by blood transfusions, along withchemotherapy.

“He lost his hair, but John andTim’s brother, Andrew, shaved theirheads, too,” Eaton said. Timothy’s otherbrother, Steven, helped him keep busyby playing video games.

Unfortunately, Timothy began expe-riencing an aching inflammation of hispancreas, or pancreatitis, just three daysafter chemotherapy began — most likelyan obscure reaction to his medicine. The only way to treat it was to keep him from eating for four to five days.

“John and I felt like the worstparents in the world, denying him that,”Eaton said. “He still was receivingnutrition through tube, but it wasn’t the same, and he was crying, begging.”

The cycle continued: chemotherapy,blood work to check progress, and morebouts of pancreatitis’ gut-wrenchingpain and food-and-drink fasts to beatthem. In August, a little more than threeweeks after being admitted, Timothy

Timothy Eaton:Checking into‘Hotel Strong’

MIRACLE KIDS

10

Five years ago this August, Cathy andMark Monrad were 20 weeks along inthe pregnancy of their first child andstruck with one of those rare pieces ofnews that halt everything.

The mid-point ultrasound checkuprevealed that the left side of theirbaby’s heart and aorta would not fullydevelop and that, to survive, their sonwould require a three-stage surgical fix at Golisano Children’s Hospital atStrong almost immediately after he wasdelivered.

The couple decided to press on with the pregnancy and give their son a chance. Just a week before Christmas2002, little Andrew entered the world by emergency C-section and immedi-ately was brought to the NeonatalIntensive Care Unit (NICU) for moni-toring. It proved a rocky start — doctorsdiscovered that he had incurred a skullfracture during labor.

“The next day was touch and go,”Cathy Monrad said. “They were deter-mining if he had suffered brain damage.But he hadn’t; for us, this was the firstof many miracles.”

With Andrew’s brain lookinghealthy, it was time for his first, eight-hour phase of corrective surgery. GeorgeAlfieris, M.D., the hospital’s leadingpediatric heart surgeon, assured theMonrads that he would treat their boylike his own.

“I know that’s something you’dexpect to hear,” Monrad said. “Butunderneath, there was more than words.There was an authenticity we can’t put

our fingers on, and we immediatelyknew he really meant it.”

Andrew was sent home in mid-January, but would return to GolisanoChildren’s Hospital in March for thesurgery’s second phase. Due to scartissue, his aorta had narrowed so much,it had virtually closed.

In the hospital, Andrew battled ablood clot and an infection. Both putsurgery on hold. But when Andrew wasfinally ready for the operation, he sailedthrough, and even bounced back quicklyenough to be featured on a televisionspot with Tom Golisano and Rich Funkeof 10NBC.

But then the tide turned again.Andrew would need more surgery—this time, not on his heart, but to removepart of his intestine which had diedfrom lack of oxygen during earlier hearttroubles. A temporary ostomy wouldallow Andrew’s belly time to heal, andhe stayed at the hospital straight throughhis parents’ first Mother’s Day andFather’s Day.

“In typical Andrew fashion, therewere a couple more bumps in the road,”Monrad said. “A mass was found in hisabdomen, which they planned topromptly remove.”

But when the chief pediatricsurgeon, Walter Pegoli, M.D., operatedto reverse the ostomy, the mass wasn’tthere anymore; it had dissipated on itsown. By this point it was clear thatAndrew was being sustained by some-thing more than just good science.

“We were starting to think of him as some sort of superhero,” Monrad said.“We were waiting for his next feat.”

Thankfully, that July marked thelast of his stays for a stretch. Just more6 months old, Andrew returned homeand, with the help of physical and occupational therapy, began running,climbing and doing normal little boythings. He avoided long stays in thechildren’s hospital for more than threeyears.

Then, last September, a few monthsbefore Andrew’s fourth birthday, thethird and final surgery was performed —again, problem-free. Within mere days,Andrew was ventilator-free and walkingcircles around the unit. His smileattracted fans, and soon, nurses anddoctors were calling him a “rock star,”because of the way he made rounds,“touring” the floor.

The day before Halloween, hischest images looked extraordinary—at last — and Andrew was cleared toresume all normal activities.

“Which meant, he promptly donnedhis cop costume and made good on hisclean bill of health by trick-or-treating,”Monrad recalled.

Andrew, now nearly 4 and a half,loves to sing, play outside, put togetherpuzzles and attend preschool, where he“absolutely thrives,” Monrad said.

“He loves music, and really is arock star, as they tease him,” Monradsaid. “He’s just as famous, too. Everytime we visit that floor, so many peoplecall out to him, saying hi. More peoplethan I can remember the names for.That’s the sort of support that you need,and it’s refreshing to know it’s still therewaiting in case we — or anyone else —ever needs it.”

Andrew Monrad: Three-stage surgical fix workswonders for this kid rock star

His smile attracted fans,

and soon nurses and

doctors were calling

him a “rock star” …

MIRACLE KIDS

11

In January 2005, Carole Woodlock andher husband, Peter Byrne, gave birth totheir son Jude when he was just morethan 24 weeks along in the pregnancy.

“We were told that there was a 50percent chance of survival, and an 80percent chance that he’d suffer severedisabilities,” Woodlock said. “I’ll neverforget those numbers.”

Woodlock, who was suffering fromthe sudden onset of complicationsrelated to H.E.L.L.P. syndrome, a rareobstetric complication, struggled tostave off labor to give Jude even just onemore protective day in the womb. Bed-rest and courses of steroids only boughthours.

Soon, it became absolutely neces-sary to deliver Jude, who was fourmonths early and at 11 inches long,weighed only 1 pound. He tried tobreathe on his own, and made a tiny cry.

“The nurses anddoctors were stunned; it’sa rare feat that a baby sosmall even attempts tocry,” Woodlock said.“Right away, we knew hewas a feisty little guy thatwas willing to fight.”

They couldn’t havebeen more right. Judeproved to be spirited allright — he preferred to bepositioned certain ways, and kept settingoff monitor alarms, testing the nursesagain and again.

“But they were so good-naturedabout it, and made a game of it,”Woodlock said.

After a whole week, the parentscould finally touch their son; though his skin was still translucent and helooked too delicate to handle, NICUnurse Val Roach assured the couple thatthey could—and should—touch him.

“He needed us too, Val said. Judelooked fragile, but craved our touch,”Woodlock said.

When Jude was 6 weeks old, his

parents could hold him outside the incu-bator. Woodlock and Byrne were thrilledto begin connecting with their sonthrough skin-to-skin holding and thedaily feeding and changing regimes. Roach continued to prove a stalwartadvocate for the family, and for thecouple being involved in the criticaldecisions about Jude’s care.

“When you first come to the NICU,it’s intimidating; the medical languagecan be absolutely foreign,” Woodlockrecalled. “But our nurses, especially Val,and our doctors made sure to empowerus. They explained everything and tooktime to educate us so that we couldmake informed choices. They alsoreminded us that with any NICU baby’sjourney, there would be peaks andvalleys, and that it’s important to not get too caught up in either, but to ride it through.”

Jude did traversethose valleys. In hissecond week, he turnedstone-grey, and came verynear to stopping breathingaltogether. He was able tobe revived.

He also couldn’t take breast milk until hewas 6 weeks old, andconsequently, had troublegaining weight and

strength through the IV nutrition alone.And, after phasing off his breathing

devices until he needed less and lesshelp (at 12 weeks, finally breathing onhis own), there came the daunting ques-tion of whether or not he should haveeye surgery to fuse his retinas, whichtypically only start to develop during the last couple of weeks of pregnancy.Surgery would save him from beingblind altogether, but the cost was givinghim only limited vision.

“As parents, we had hopes that hisvision might improve on his own, anddreaded making that big, limitary deci-sion. We wanted to give Jude some

more time,” Woodlock said. That blend of all opinions — theirs,

and that of the physicians and the nurses—was the best way to make decisions,Woodlock said. Nurses like Roach keptreminding them that as parents, theyknew their child better than anyone else.

“Carol and her husband took advan-tage of our NICU’s longtime emphasison family-centered care,” said GloriaPryhuber, M.D., who specializes in acuteand chronic lung diseases in preemieslike Jude. “Carol was always thinking,‘what about this, and what about that?’She was clearly Jude’s advocate.”

The time came where Jude, at 3.5pounds and after a 100-plus day stay,was strong enough to head home.Miraculously, his vision did improvewith assistance of an early interventionvision specialist.

Today, it is perfect. “Carol and Peter spent so many

hours spent at Jude’s bedside — waiting,talking to Jude, encouraging him,

Jude Byrne: A feisty little fighter from the get-go

Continued on page 12

MIRACLE KIDS

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hospital,” Livingston said. “Cal’s werephenomenal!”

Cal’s care required coordinatedexpertise, drawing from physicians andsurgeons from many of the children’shospital’s departments.

“Each one knew what the other wasdoing,” Livingston said. She credits thissynchronization in large part to DavidSiegel, M.D., M.P.H., Cal’s pediatricrheumatologist (also the hospital’s chief of Pediatric Rheumatology andImmunology), whose efforts, Livingstonadds, with Cal were wonderful, veryreassuring.

Cal also forged a unique bond withRob Humphreys, M.D., a pediatricnephrology fellow who was willing tospeak at Cal’s level, not above his head.

Humphreys ran the New York CityMarathon as a fundraiser in Cal’s honor,and presented Cal with his finisher’smedal—encouraging Cal to keeprunning his own race, to keep chasingafter health, to head home.

Finally, on the last day ofNovember, after nearly one year in thehospital, he was discharged. In Geneseo,he was greeted by a cheering crowdoutside his high school, a trail of well-wishers’ signs in store windows and a sign with “Welcome Home Cal!” ingallant, blue lettering adorned the frontof his home.

Cal is keeping busy with physicaltherapy and catching up with his coursework.

“He has an iron will,” Livingstonsaid. “I think he’s proven that. Only an iron will — coupled with the care wefound at Golisano Children’s Hospital—could have brought him back home.”

was able to go home and receive hismedicine as an outpatient, first weekly,then bi-weekly, then monthly, and then,in October 2004, he no longer receivedany at all.

In October, barring no surprises,Timothy will join the ranks of manychildhood cancer conquerors.

“He’s the ‘bounce-back kid,’ he’s so resilient,” Asselin said.

The pancreatitis attacks, however,continue. The day after last Thanks-giving, Timothy experienced one thatwas so agonizing, he begged to be takento the hospital.

“We checked into ‘Hotel Strong,’as I’ve come to call it,” Eaton said.

Timothy stayed for another three weeks.To prevent future attacks, Timothyreceives enzyme therapy and is kept on alow-fat diet that Eaton admits is tough foran already-skinny 7-year-old. Still, mostof the time, it helps him to keep feelinggood, and to keep smiling —scoring 101percent on a recent second-grade mathtest, taking up lacrosse and swimming asoften as he can.

“We’ve only found the best atGolisano Children’s Hospital,” Eatonsaid. “The doctors made a point to makesure we were comfortable, whether itmeant arranging a room with an extrabed or two, so we could be right therewith Tim, or kidding around with him tomake him feel comfortable, poking hisnose with a stethoscope to examine himfor ‘nose-itis.’”

It’s true family-centered care, shesaid, “and it was only 10 minutes awayfrom our home, virtually in our back-yard. You really couldn’t ask for muchmore.”

enduring the tough times when thingsweren’t going so well and celebratingthe successes as they came,” said TimStevens, M.D., M.P.H., the NICU’smedical director. “Jude’s health is amiracle we’ll share with the Byrnefamily forever.”

Today, Jude jumps, runs and isextremely active. “He and his brotherBrendan are great buddies, and theyread and play together,” Woodlock said.“He still receives speech therapy, andstill battles some sensory issues, butthere are none of the looming chal-lenges we were so worried about.”

Roach, known to Jude and hisfamily as “Auntie Val,” is now Jude’shonorary godmother.

Continued from page 11Continued from page 9Continued from page 8

Cal Livingston Timothy Eaton Jude Byrne

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CMNNews

Asha Lawhorn and Kathy Cushman smile, representingAuntie Anne’s Pretzel’s at Eastview Mall and their strongwall of support.

Brenda Sandy, of Kinney Drugs, is helping to change livesin Canandaigua.

Rebecca List and Liza Eider, of Canandaigua Wal-Mart,help kids.

♥

Our sponsors’ balloons take us to new heightsThey serve flapjacks, sell dream homes, twist pretzels andmore, but the common thread knit between the diverse busi-nesses and groups below is that they love Rochester’s kids andwant to keep them healthy.

As Children’s Miracle Network sponsors, many of them are atit again this spring, selling our orange-and-yellow CMNballoons for only $1 each. These balloons, paired with oursponsors’ other creative fundraising tactics, really add up, too:over the past year, our CMN sponsors have raised more than$345,780!

Best of all, since the hallmark of the CMN organization is that allmoney stays to work locally in the community in which it’s raised,your faithful support of their charitable endeavors is benefitingkids right here at Golisano Children’s Hospital at Strong.

A heartfelt thanks to CMN sponsors

Wal-Mart rings in 20 years of partnershipAs longstanding sponsors, our local Wal-Mart stores haveproven stalwart partners, raising more than $1.3 million tosupport the region’s only children’s hospital since they cameon board in 1991. Most impressively, most of that was raisedonly a dollar at a time, and giving has ramped up in recentyears — making it clear that customers and Wal-Martemployees alike are working harder than ever for the sake ofchildren. Nearly half of these dollars were raised in the pastfour years!

On a national scope, Wal-Mart celebrates 20 years of partneringwith children’s hospitals across the country.

Ace Hardware Corp.The American LegionAuntie Anne’s Blockbuster Coca-Cola North AmericaCredit Unions for KidsEckerd PharmacyGolf GalaxyThe Hershey CompanyHMSHostForesters

IHOP Corp.Kinney DrugsKiwanis & Key ClubLaidlaw Transit, Inc.Marriott RE/MAXRite Aid CorporationSam’s ClubSunocoWal-Mart

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Upcoming events

June 2–3, Miracle Weekend (10NBCTelethon and annual Stroll for Strong Kids)Tune into 10NBC’s annual Telethon onSaturday and Sunday evening to raise moneyfor Golisano Children’s Hospital at Strong. OnSaturday, join in the fun at the 11th annualStroll for Strong Kids at Genesee Valley Park,Rochester. For more information on eitherevent, call (585) 273-5948.

June 21–24, 8th annual The Drive forMiracles RadiothonTune in to 100.5 The Drive as we broadcastlive from the Strong Memorial Hospital LobbyThursday, June 21 and Friday, June 22, andfrom Eastview Mall on Saturday, June 23 andSunday, June 24. For more information or tolearn about sponsorship opportunities, callBetsy Findlay at (585) 273-5933 or AngelaPullen at (585) 273-5937.

‘An Evening of Wine and Wishes’Raises Glasses,Funds“An Evening of Wine and Wishes,” thefirst black-tie benefit for the NeonatalIntensive Care Unit at GolisanoChildren’s Hospital at Strong, celebratedthe tiniest, neediest premature andnewborn babies in the Finger Lakesregion. Together, we raised funds,awareness and even wine glasses tosupport their special care needs March 3 at Artisan Works.

The evening paired wine tasting fromseveral Finger Lakes wineries, horsd’oeuvres, dessert, a silent auction andjazz music together with emotional videofootage, portraiture and speeches.

Together, we raised $40,000—enough to purchase an additionalGiraffe bed, the most advanced incu-bator available. Giraffe beds createunsurpassed thermal heating environ-ments and include special features,

June 30, High Fidelity Summer Band Jam,High Fidelity (formerly Milestones). JoinMommies for Miracles as they help to raisefunds for Golisano Children’s Hospital atStrong with this summertime concert, 5 p.m.to 1 a.m. Admission is $10 and includes afree drink token. To learn more, call JillOrologio at (585) 507-5367.

July 28, 18th annual Ten Ugly Men Festival,Genesee Valley Park, Rochester. Ready tohave some fun and support GolisanoChildren’s Hospital at the same time? Ventureout to the TUM Festival from 11 a.m. to 8 p.m.for some serious dodgeball, bocce ball andkickball tournaments—not to mention a 5KRace. Visit www.tenuglymen.com for moreinformation or to purchase tickets. To volun-teer, call Karen Eisenberg at (585) 273-1462or Linda Dirksen at (585) 273-5939.

Aug. 6: Tim Milgate Charity Golf Tournament,Deerfield Country Club, call (585) 352-6543.

July 17: Otter Lodge Golf TournamentVictor Hills, call Darren Cummings at (585)747-2501.

Aug. 25, 3rd annual Fairport Music and FoodFestival, Fairport Junction Canal Area. Temptyour taste buds and hear tunes at this all-dayfestival, featuring multiple bands, kids’ activi-ties, karaoke, a smorgasbord of Fairportfoods. Learn more by visiting www.fairport-musicfest.com.

Sept. 10, 11th Annual Golisano Children’sHospital Golf Classic, at Monroe Golf Club,Irondequoit C.C., Ravenwood Greystone GolfClubs with dinner following golf at MonroeGolf Club. For more information, call (585)273-5948 or www.gchas.org.

including a Lazy Susan style mattressthat rotates 360 degrees, a built-in scaleand more access portholes, whichreduce all the need to disturb delicatebabies while administering care.

You can continue helping to supportthe purchase of additional Giraffe beds

by purchasing a fundraising t-shirt fromDoodle Bugs! Children’s Centers. Learnmore at www.gchas.org.

Board member Al Chesonis, and wife, Amy, sample a wine up for bid.

11

in the National Pancake Day Celebration.The stores gave away free short stacks tocustomers, who in turn responded gener-ously, and donated $2,100 to GolisanoChildren’s Hospital.

• The University of Rochester MedicalSchool’s class of 2010 raised $264 for ourChild Life department.

• Congratulations to Martha Brown MiddleSchool in Fairport. The school held its 3rdannual Kid-2-Kid fundraiser on March 15 and16 — a dance marathon, which raised morethan $17, 000 for Golisano Children’sHospital!

• Peter Ryan, an eighth grade student atSienna Catholic Academy, sold candy heartsto his classmates for Valentine’s Day andraised $500!

• ADT Security Services held a fundraiser forGolisano Children’s Hospital and raised $386.

• The 34th annual Brockport High SchoolLeukemia Dance Marathon raised $15,391for Leukemia Research currently underwayat the children’s hospital.

• The 5th annual Taylor Brush Memorial DinnerDance was held on March 10 at the DiplomatBanquet Center and raised $5,800 for theNICU! Thank you to Tim and Jen Brush fororganizing this!

• Geneseo Youth Hockey League held theirannual shoot out fundraiser and raised anastounding $12,075 for Golisano Children’sHospital!

• Thank you to Craig Charron for organizing

Special Thanks

15

Many thanks to all of these groups and the countless others that continue to support our region’s only children’s hospital!

• The 3rd annual Cycle for Hope on Feb. 3 washeld at Penfield Racquet and Fitness Club,The Iron Butterfly, Midtown Athletic Club,Rochester Athletic Club, Flex Gym, Gold’sGym, PHA Fitness Club and World Gym, andraised more than $19,000 for GolisanoChildren’s Hospital and Camp Good Days andSpecial Times!

• The 5th annual Ski Invitational, held Feb. 5 at Bristol Mountain and organized by PaulTessoni, raised $28,000!

• Paychex held a Super Bowl party and raised$510 for Golisano Children’s Hospital!

• East Irondequoit Middle School held theirannual “Break a Rule” fundraiser and raised$836 for the kids at Golisano Children’sHospital!

• Kudos to LeRoy Hearth and Home who heldan open house and donated $124 from their50/50 raffle to Golisano Children’s Hospital.

• Elim Baptist Church in Lima raised $1,250 forthe NICU from their Ladies Holiday Brunch.

• Pactiv Corp. raised $81 from their “BiggestLoser” fundraiser.

• Area Tim Hortons stores sold their double-sized chocolate chip Smile Cookies, raising$6,000 for the region’s only children’shospital.

• Melinda Farina organized a “Fluff and Stuff”party for the children in the hospital on Feb.16 in memory of her classmate Shari Alent.

• Two local IHOP restaurants participated

Support from the Senator,KiwaniansSenator Jim Alesi (R-Perinton) and his fellowPenfield-Perinton Kiwanians showed supportfor Golisano Children’s Hospital in March at a special luncheon. Together with theclub, Alesi secured and presented a $12,500check to be used for the William and MildredLevine Pediatric Surgical Suite, whichopened to patients in July.

The surgical suite continues to providea brand of child- and family-friendly care thathas revolutionized the surgical experience—making procedures less daunting and morecomfortable for children that need them.

the 2nd annual Sabres vs. Amerks AlumniGame on March 25 at the Blue CrossArena. The event raised more than $4,000for Golisano Children’s Hospital! Thankyou!

• Thaddeus Mack organized a Toast andRoast birthday celebration on March 25and raised $2,600 for Golisano Children’sHospital.

• Fleet Feet’s 15K Spring Forward race heldon April 1 donated $1 from every race entryto Golisano Children’s Hospital.

• Dave Hill, bartender at Spikes Bar onMonroe Avenue, held a “Monroe AvenueCares for Kids” fundraiser April 6 anddonated all of his tips back to GolisanoChildren’s Hospital. Thanks, Dave!

• The 5th annual Talent for Tots and Teens,organized by Ida Wheeler, was held onFriday, April 20 and raised $2,231. Allproceeds benefited Golisano Children’sHospital.

• Mud About You, a new paint-your-own-pottery spot in Penfield, held its grandopening in May and proceeds from thenight were donated to Golisano Children’sHospital.

• Throughout the entire month of May,Amanda Padgham Photography donated apercentage of sales to Golisano Children’sHospital!

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