inside this issue: Deep Brain Stimulation life after ... - Cook Children's

promisethe magazine of Cook Children‘s | Winter 2008inside this issue:Deep BrainStimulationlife after cancerpastoral careannual honor rollof giving

our promiseCook Children’s Promiseis a publication ofCook Children’s801 Seventh AvenueFort Worth, Texas 76104-2796682-885-4000www.cookchildrens.orgfeatureson the cover:Sam Gladen with hisdoctors, Warren Marks, M.D.,John Honeycutt, M.D.and Fernando Acosta, M.D.on a followup visit afterhis brain surgery.board membersCook Children’sHealth Foundationboard of trusteesGary G. Walsh,ChairmanJohn P. Boswell,Vice ChairmanJeffrey B. “Jeff” King,Vice ChairmanRichard F. Garvey,Secretary/TreasurerKeely AppletonRobin W. ArenaDaniel E. BerceG. Thomas BoswellLezlie P. DavisJames R. Dunaway, Jr.Linda Morris ElseyDavid G. FischerRafael G. GarzaEric K. GrubbsJoy Ann HavranNancy K. HowardNick M. KypreosGeorge F. LebusG. Malcolm LoudenDan E. LowranceTracy McGeheeArdon E. Moore IIIMichael R. PavellJoseph C. PenshornJ. Russell “Rusty” ReidEdwin S. “Win” RyanLynda L. ShropshireVickie V. StevensNenetta C. TatumJoe R. ThompsonUlla K. WilskaCook Children’sHealth Care Systemboard of trusteesGary G. Walsh,ChairmanW. Britt Nelson, M.D.,Vice ChairmanR. Jeffrey Alexander,Secretary, TreasurerKimberly D. Aaron, M.D.Daniel E. BerceG. Thomas BoswellJohn P. BoswellMichael Deitchman, M.D.James B. DeMoss IIIJames R. Dunaway, Jr.Richard F. GarveyKnowing that every child’s life is sacred, it is the promise of Cook Children’sto improve the health of every child in our region through the preventionand treatment of illness, disease and injury.our valuesSafety, Caring, Integrity, Collaboration, Innovation, Giving“Every Child: 2020”“Every Child: 2020” is the ‘map’ we followto improve the health of every child in our region.map points• Enhance the child and family centeredenvironment of care.• Expand access to health services• Provide the highest quality of care andsafety built upon evidence from clinicaland health service research.• Foster the continued growth and developmentof great physicians, great leaders and great staff.• Capitalize upon our unique health care delivery systemto better integrate processes, services and companies.• Enhance community-wide collaborations, coordinate healthresources and information, to meet the region’s growingchildren’s health needs.Susan L. Hess, M.D.Howard M. Kelfer, M.D.Jeffrey B. “Jeff” KingWilliam David LacyG. Malcolm LoudenJames P. Miller, M.D.Joseph C. PenshornWilfred L. Raine, M.D.Nenetta C. TatumJason V. Terk, M.D.Paul S. Thornton, M.D.Cook Children’sMedical Centerboard of trusteesW. David Lacy,ChairmanJames B. DeMoss III,Vice ChairmanR. Jeffrey AlexanderJames F. Herd, Sr., M.D.Marsha HilcherChristopher M. HuckabeePatti McConnellAnn NauwelaersRoger P. NoberPeter L. PhilpottCarol M. RobertsG. Douglas Tatum, M.D.Andrew S. WayneCook Children’sHealth Planboard of trusteesJames B. DeMoss III,ChairmanWilfred L. Raine, M.D.,Vice ChairmanJohn P. BoswellGeorge F. LebusMaria del Pilar Levy, M.D.G. Malcolm LoudenDonald K. Murphey, M.D.Michael R. PavellJ. Russell “Rusty” ReidG. Douglas Tatum, M.D.Todd Wolf, M.D.Kevin D. Wylie, D.O.Cook Children’sHome Healthboard of trusteesJoseph C. Penshorn,ChairmanAngel Hernandez, MD,Vice ChairmanRobin W. ArenaRichard P. Howrey, M.D.Tracy McGeheePeter L. PhilpottVickie StevensUlla K. Wilskamedical staff officersLarry E. Easterling, M.D.,PresidentGretchen Eames, M.D.,Vice President – QualityDonald K. Murphey, M.D.,Vice President – Credentialingsupport organizationsLisa Wilson,President – Friends ofCamp SanguinityGail Landreth,President – Jewel Charity, Inc.Beth Stevener,President – Woman’s BoardSystem President and CEORick W. MerrillSenior Vice President,Cook Children’sHealth FoundationRobert K. FeatherEditorKyndall CunninghamWritersDaron AldridgeLesley AtkinsonJeff CallawayKyndall CunninghamKatherine CurtisJennifer JohnsonWhitney LangdonJulie MeltonKaren NicholsSpecial thanks to contributorsMichele AngevinShelly BordersCarol DeramusWinifred KingLinda MizeKristin PeaksLauren SappContributing PhotographersLeo WessonDesign and ProductionPropel Group, Inc.Cook Children’s is a privatelyendowed, non-profit medicalcenter with a medical anddental staff serving childrenfrom infancy to age 21.Fully accredited by the JointCommission on Accreditationof Healthcare Organizations(JCAHO). A member of theNational Association ofChildren’s Hospitals andRelated Institutions(NACHRI),Children’s HospitalAssociation of Texas,Child Health Corporationof America and theChildren’s Miracle Network.© Copyright 2008Cook Children’s. Contentsmay not be reproducedwithout permission.If you wish to be removedfrom the mailing list forChildren’s Promise,please call theCook Children’sHealth Foundationat 682-885-4105.04 Deep BrainStimulation13 yes, there is aSanta Clauscontents03 a message to our donors16 event wrap ups18 check presentations19 Peter Pan Birthday ClubHochberger Auditoriumchair plaques20 news24 ’tis the season of giving08 life after cancer14 Donor Dinner 200810 pastoral care25 annual honor roll of giving61 holiday wish list 2008

a message to our donorsDeep Brain StimulationCook Children’sis committed toimproving thehealth of everychild in ourcommunity, andyour supportprovides themeans for thatto happen.Cook Children’s Health Care System President andCEO, Rick W. Merrill.In this issue of Promise we feature anamazing success story of a child treated atCook Children’s and of the doctors who arepioneering our signature Deep Brain Stimulationprogram. This is a first for Cook Children’s thatsets us apart from other children’s hospitals.It is through procedures like these that weare helping kids like Sam lead a full andproductive life.We also are proud to be able to recognizeand honor our donors. Philanthropic gifts arevital. They allow us the opportunity to care forour youngest citizens. This is an impressive list ofindividuals and businesses that have really madea difference. Cook Children’s is committed toimproving the health of every child in ourcommunity, and your support provides themeans for that to happen.Every day we see an example of theoverwhelming spirit of giving and dedicationto children. Caring for their physical, emotionaland spiritual needs takes a combined effort.Whether it’s portraying Santa Claus, hosting anannual event like Cookies and Castles, or sayinga prayer, we are continually blessed byextraordinary displays of kindness.Thank you for your commitment toCook Children’s. Families going throughdifficult times with sick children are vulnerableand in need of our compassion, and you haveshown that in abundance.Cook Children’s wishes you and yourfamily the healthiest of new years.Air dates forthe specialwill be SaturdayDecember 13th at 6:30 p.m.with a repeat of the programon Christmas Day at 5 p.m.The nicely dressed young man gladly signedautographs for an eager audience who had justwatched his screen debut. After all, the 13-yearoldhas all the makings of a star – good looks,a quick wit and commanding presence.For those in attendance at the CookChildren’s donor appreciation dinner inSeptember, they will remember his name –Sam Gladen. Sam was the star of a documentarydescribing Cook Children’s leading-edgeDeep Brain Stimulation (DBS) program andhis battle with a rare disease known ashereditary dystonia.“Something is telling my brain that when myfoot is normal, it’s causing me pain,” Sam said.“The dystonia takes my foot and contorts it. Allit really does is cause me more pain, but thebrain doesn’t register it.”Sam gave permission for film crews fromNBC 5 and Cook Children’s, as well as theStar-Telegram, to follow him as he preparedand went through DBS surgery to treat hisdystonia. NBC 5 continues to follow Samduring his amazing recovery for a special thatwill air in December.Although he’s only 13, Sam seems destinedfor something great. He makes you laugh with adry sense of humor and a keen sense of timing.And when he speaks about all he’s been throughof late, it’s poignant and powerful.Sam’s ordeal began in March 2007.The Gladen family was walking down a streetand Sam fell down on the sidewalk becausehe said his leg went out. Sam’s parents,Debbie and Kent, thought their son was tryingto be funny.Things became worse later in the month,when Sam returned home from a mission tripon March 23, the day after his grandmotherdied. On March 29, the day of hisgrandmother’s funeral, Sam could notwalk and he needed crutches. Somethingwas legitimately wrong with the Gladen’slittle boy.Debbie and Kent looked for answers. Theyfound them, but the answers were unfortunatelywrong. He was misdiagnosed several times. TheGladens were told Sam was growing too fast,that he had problems with a tendon in his kneeand that it was psychological because of hisgrandmother’s death.The Gladens consulted with a number ofphysicians, including their family pediatrician,a podiatrist, and an orthopedic surgeon, butstill found no help for their son. To make mattersworse, Sam’s toes began to curl in and he couldnot unclench them. He remained inconstant pain.Sam went to aneurologist in Dallas.The neurologist saidit looked likedystonia, but hehad only seenone case andwas notequipped totreat Sam.Sam wastreated withBotox injectionswhich werepainful, butprovided reliefthat was at besttemporary. Hebegged thetreatment bestopped.below:Sam Gladen02cook children’s promise – the magazine of Cook Children’s Winter 2008 03

The medication Sam took left him sleepy andnauseous, and effected changes in his mood.He was prescribed physical therapy inhopes of forcing his leg back to its properposition, causing excruciating pain for Sambecause the dystonia prevented his leg frommoving. This occurred for six weeks, leavingthe Gladen family in more pain – bothphysically and mentally.“It was extremely frustrating,” Sam said.“I knew it was happening. I had no clue howto explain it. I was tired of being told that all Ineeded was a good dose of counseling and Iwould be OK. This will sound weird, but I reallywas relieved when they found something on theMRI because at that point I was starting tobelieve it was all in my head.”With tears welling up in her eyes, Debbieagrees with her son. “What upset us was thatsomeone could make us doubt our child,”she said.Dystonia is a syndrome of disorderedmuscle contractions, causing painful abnormalpatterns of movement, poorly controlledpurposeful movements or abnormal postureswhich may occur in virtually any part of thebody. Essentially, this causes muscles to beactivated in an abnormal sequence, makingpurposeful movements difficult.Test results showed Sam had a geneticform of dystonia. Dystonia may result fromother causes, such as trauma, medications orother medical conditions. It is believed thatfamily members from both Sam’s father andmother dealt with some form of dystonia,including Sam’s grandmother, but it hadnever been diagnosed.Dystonia causes varying degrees of disabilityand pain, from mild to severe. To date, there isno cure, but DBS surgery can slow down or insome cases stop the dystonia from spreading.The fear was that Sam’s disease would continueto spread throughout his body.Now the Gladens knew what they weredealing with, but still struggled to find help.They were referred to a Houston hospital, butcould not get their questions answered.After an Internet search looking for anotherhospital close to home that treated dystonia,they then called a hospital in Oklahoma Citywhere a nurse told them Cook Children’s wastreating the disease. As it turned out, that wasquite the understatement.Physician network pediatric neurologistsFernando Acosta, M.D., and Warren Marks,M.D., along with pediatric neurosurgeon JohnHoneycutt, M.D., collaborated to establishCook Children’s as one of the elite pediatricDeep Brain Stimulation programs in the nation.The first implant at Cook Children’s wasperformed in September 2007.Cook Children’s is the first independentpediatric hospital in the United States, and theonly children’s hospital in Texas, to offer acomprehensive pediatric movement disorderprogram that includes Deep Brain Stimulationsurgery, which is used to restore normalmovements in patients with dystonia.The DBS operation is a surgical procedureinvolving the placement of electrodes into thebrain that are connected to an implanted4 cook children’s promise – the magazine of Cook Children’sWinter 2008 5

Sam’s surgerylasted eighthours, withhim consciousthe majorityof the timewhich allowsthe physiciansto betterdetermine hisprogress andhelps ensureaccurateplacement ofthe deep brainstimulators.medical device sometimes referred to as abrain pacemaker. The electrodes deliver constantsmall electrical impulses to a small region ofthe brain, providing remarkable therapeuticbenefits for otherwise treatment-resistantmovement disorders. The majority of patientstreated at Cook Children’s have been fordystonia, but the surgery also helps with othermovement disorders including Parkinson’sdisease and tremors.“We are doing as much as anybody andmore than most in the country when it comesto improving children’s lives,” Dr. Marks said.“We continue to expand our offerings. Wecontinue to push the limits of treatment. In thefuture we will have the ability to treat morechildren and more complex neurologicaldiseases and make them even better. I’m reallyexcited about our ability to bring these newand innovative approaches to solving somevery complex issues.”Sam’s first visit at Cook Children’s occurredon the Tuesday before Thanksgiving in 2007,when he met Dr. Acosta. “Sam and Dr. Acostaformed a strong and immediate bond. For us,Dr. Acosta was heaven sent,” Debbie said.After a conference with the Cook Children’sneurologists, neurosurgeon and the Gladenfamily, including Sam, the decision was madeto have the DBS surgery.“Dr. Honeycutt explained to Sam exactlyhow the surgery would go, pretty much step bystep,” Kent said. “He explained to him what itsounded like. He told him it would sound likea jet engine in his head. We decided the prosoutweighed the cons.”“The concern is that if you do not havethe surgery, the dystonia will continue toprogress through his body because of his age,”Dr. Acosta said. “The surgery has the potentialto slow the progression.”The DBS program at Cook Children’s has adedicated group of more than 25 involved teammembers including neurosurgeons, neurologists,anesthesiologists, nurses, therapists, techniciansand Child Life specialists, who are committed tothe development of the program and the care ofpatients. Sam’s surgery lasted eight hours, withhim conscious the majority of the time whichallows the physicians to better determine hisprogress and helps ensure accurate placement ofthe deep brain stimulators. Throughout theprocess, a Child Life specialist, Kristin LaBoon,stayed with Sam to help keep him calm and tocomfort him through the surgery.The extensive involvement of the Child Lifespecialist is an important and unique aspect ofthe Cook Children’s DBS program that really setsthe program apart from other programs. ChildLife helps explain the surgery to patients at alevel they will understand. Child Life meets withpatients the day before the surgery to establish arelationship with them.“Child Life has been huge,” Dr. Acosta said.“They are with the patient from start to finish.They have a very calming effect on the patient.It allows the neurosurgeons, neurologists andall others involved in the case to focus on theircritical aspect of the case, while Child Lifefocuses on the child’s mind and spirit, makingsure the child is comforted.”The family believed hoping for Sam’s foot toreturn to normal was too much. They simplywanted to see their little boy be better, feel lesspain and maybe walk without as much of alimp. But they got so much more.The DBS surgery allowed Sam to stop takingthe painful Botox injections, he no longer wearsthe bulky brace that goes up to his knee, and heno longer takes the medication that left himgroggy. “In Sam’s case, we could not have askedfor a better result,” Dr. Acosta said.Kent and Debbie said they have their happyboy back. Sam, an avid sailor and Boy Scout,has become active again, even participating in agame of pick-up football now and then.“We have made it through all of this and wefeel so blessed for the people who we havecome in contact with at Cook Children’s, whohave taken care of Sam,” Debbie said. “It’s beenan amazing trip for our family. But one that inthe end was all worth it, thanks to the excellentDBS program at Cook Children’s.”Would you expect anything less than a happyending from the debut of a star like Sam Gladen?Remember his name.above left:The Cook Children’s DeepBrain Stimulation team.06 cook children’s promise – the magazine of Cook Children’sWinter 2008 07

Because of theadvancement inthe treatmentof childrenwith cancer oncooperativeclinical trialsin pediatriconcologycenters, evenyoung adultsare beingtreated at CookChildren’s,which remainsat the leadingedge of care.life after cancerNew approaches and discoveries in thetreatment of childhood cancers makes survivingpast the diagnosis a reality for more patientstoday than ever before. More than 80 percent ofchildren diagnosed with cancer are expected tobe long-term survivors. As a result, there is agrowing population of individuals who havebeen cured of childhood cancer, but now faceuncharacteristic challenges as adults.Analyzing survivorship data is vital and willset the stage for treatment of future survivors.Cook Children’s is pleased to have recentlybeen awarded entry into the ChildhoodCancer Survivor Study (CCSS) to participateand contribute to this growing field of research.The CCSS is coordinated through St. JudeChildren’s Research Hospital and is funded by agrant from the National Cancer Institute. Thestudy was created to gain knowledge about thelong-term effects of cancer and to educatesurvivors about the potential impacts of theirdiagnosis and treatment on their health. CookChildren’s joins Texas Children’s Hospital inHouston as the only other children’s hospital inTexas involved in the study.Several years ago Cook Children’s establishedthe Life After Cancer Program (LACP) to addressthe needs of current and former patients. Andnow, after surviving cancer as children, manyadults still experience the caring naturethey always have known at CookChildren’s via the Life AfterCancer young adultprogram.Childhoodcancersurvivors,some intheir latethirties,meet tosupporteach other and discuss ways to cope withcomplications they sometimes face as long-termsurvivors, including late effects from treatmentof cancer, and emotional and social issues.Lisa Bashore, program coordinator for theLACP, felt the need to establish the groupbecause it can be difficult for cancer survivorsto meet people who truly know what they havegone through and what they continue to copewith as adults. The group also includes a numberof young adults who are currently patients.Because of the advancement in the treatmentof children with cancer on cooperative clinicaltrials in pediatric oncology centers, even youngadults are being treated at Cook Children’s,which remains at the leading edge of care.The group is facilitated by Maria Gardner,a former Cook Children’s patient and now alicensed social worker (LBSW) who serves assupport group coordinator. “We did not wantthese to be ‘hi my name is’ kind of meetings thatwere formal and strict,” Gardner said. “We wantit to be fun, but at the same time if someonebrings up a serious topic, we want to be thereto offer our support.”The members of the group serve as livingexamples of the progress of cancer researchin the United States and they are the livinglegacy of Cook Children’s Hematology/Oncology Program:Kara Haire, 27, is 10 years removed from herblood cord transplant. She describes the timeleading up to the transplant as “real fuzzy.”What she does remember is how scaredshe was after learning she had cancer.Like many of the former cancerpatients at Cook Children’s, sheconsiders it a second home.She laughs at the way herfamily used the medicalcenter as acentral meeting place and a good way toget together because they are scatteredthroughout Texas. Now she has found a newgathering place with the Life After CancerGroup. “For awhile I was thinking I was theonly one who had survived and was now anadult still surviving,” Haire said.Last year, members of the group traveledto Breckenridge, Colorado for a ski trip. Theskiers were made up of some of the first patientstreated at Cook Children’s alongside some whojust graduated from high school. Monica Patel,31, was diagnosed with Acute LymphoblasticLeukemia (ALL) in 1981 and had a relapse in1983. She recalls her trip to Colorado with thegroup. “I spent time with a lot of people whohad different problems than me, but kind ofthe same,” Patel said. “It was a really goodopportunity to find out about other people andgives you the opportunity to find out how otherpeople are going at their problems and howthey are dealing with it.”Jennifer Torrez, 21, and Jessica Cloutier, 20,are two of the younger members of the group.Torrez was a patient at Cook Children’s in 2005when she was diagnosed with large B-CellNon-Hodgkin’s Lymphoma. Torrez said shewanted to get in and get things over withas quickly as possible, never dreamingshe would have to stay at Cook Children’sfor eight or nine months. She said therewere times when she blocked anyone andeveryone out. But now she is glad to be a part ofthe group. “It’s different,” Torrez said. “It’s niceto have people to talk to and I love to listen. Youget to learn their stories and know more aboutwhat is going on.”Jessica Cloutier received a bone marrowtransplant in 1999 and continues to be seenat Cook Children’s for regular six-monthcheckups. She is a student at the University ofTexas at Arlington and said the ski trip couldnot have come at a better time for her. “It isreally important to me to have this group ofpeople to talk to,” she said. “It is a big part ofmy life. It was really fun to kind of get awayfrom everything.”Young adult cancer survivors must continueto remain vigilant about their long-term health.The support offered through the Life After Cancerprogram has helped. The exchange of learningfrom one another has had other benefits as well.Denise Chabarria spent three weeks in thehospital for a bone marrow transplant. Chabarriawanted to do something nice for her nurses soa Child Life specialist at Cook Children’s helpedher bake cookies. She enjoyed that experienceso much that she knew baking could be morethan just a great way to say thank you. TodayChabarria is continuing to make people happyin her career as a baker.08 cook children’s promise – the magazine of Cook Children’s Winter 2008 09

pastoral careabove:Ann Miller, Ph.D., LPC,LMFT, BCCC, directorof pastoral care,conducts Kids Chapelevery Thursday.We appreciatethat for mostpeople in thiscommunity,faith isessential tohealth andwellness.People often remark, “There’s just somethingspecial about Cook Children’s.” Beyond ouruncommon attention to detail, the world-classskill of our physicians and nurses, and ourchild-friendly/child-knowledgeable staff,there is a spirit about Cook Children’s.The Cook Children’s spirit enhances our staffrecruitment and retention, as the very bestprofessionals want to be part of who we are andwhat we do. The Cook Children’s spirit factorsgreatly in the decision of many communitymembers to support our work financially andthrough volunteer efforts. And our spiritembraces children and families who partnerwith us for the health care of their children.You can see our spirit in high-level decisions,such as our commitment to the health needs ofthe homeless children in Fort Worth and ourbold expansion to care for the next generationof little ones.Our spirit lives in the commitment of ourgroundskeepers and housekeeping staff, in thosewho deliver food trays to patients’ rooms, andthe staff who attend to administrative details.Our customer feedback reflects this reality.Not only do families praise our compassionatedoctors and nurses, they often mention a clerkor cashier or volunteer who made a differencefor good in that family’s stay at Cook Children’s.A wise person once said, “In every encounter,no matter how brief, we either give life to theother person or we take life from them.” AtCook Children’s, we want to give life – everychild, every time.The mission of Pastoral Care is to nurturethe spirit of Cook Children’s. Our chaplainscare not only for patients and families, butfor our physicians and staff, administrators,board members, donors, volunteers, andclergy/lay leaders from the community whovisit patients here.Sometimes the work of ourchaplains is dramatic; justas often it is quiet and unseen,holding as sacred the sharedjoys and struggles of aperson’s heartChaplain Peggy Johnson remembers caringfor a family from India who spoke Bengali and abit of English. Their 6-week-old baby neededheart surgery. The mother felt frightened andalone in a strange culture. She needed a friendto wait and pray with her, preferably someonewho understood her language and her culture.The nurses asked the chaplain’s office for help.Peggy began to call various local groups whominister with new immigrants. A Fort Worthdenominational office referred her to anArlington congregation that offered a class inESL – English as a Second Language. Severalphone calls later the teacher offered a phonenumber for another woman, a recent immigrantwho spoke Bengali. As Peggy tried to relay thislong chain of events to the mother, her face litup, and she said, “You found my friend!” Peggysaid, “This mother knew almost no one in Texas,and I had been led to the one person whose visitwould mean the most to her. Every day atCook Children’s, we are part of providentialcare. I am grateful for that.”Chaplain Supervisor, Dr. Steve Irwin, talkedof working with a teenage boy with cancer whois coping with the effects of his illness and withthe effects of chemotherapy toxicity. He has lostconsiderable muscle mass and is working hardto regain his physical and spiritual strength.Steve said, “I count it a holy honor to accompanythis young man as he poses his honest questionsand wonders where God is in his struggle. I amgrateful that Cook Children’s considers spiritualcare an integral part of helping a child andfamily toward a healthier life.”At Cook Children’s we understand thatunless each of us is free to worship as we seefit, none of us is truly free to do so. We haveMuslim prayer rugs and Protestant hymnals,Bibles, and sacred texts from several otherreligions. Together, Pastoral Care and Child Lifesponsor Kids Chapel and Teen Chapel forinpatients. We have contacts with many faithgroups, 130 of whom receive the CookChildren’s Prayer List each week. We appreciatethat for most people in this community, faithis essential to health and wellness.Cook Children’s is the only hospital inthis diocese with a full-time Catholic priest.We are also the first hospital in this diocesewith a tabernacle for reserved sacrament.Cook Children’s staff who are Eucharisticministers are available around the clock toprovide Communion.We serve in the moment, but sometimesthe blessing continues. A few weeks ago, I leda chapel service for children and families.Afterward, a mother asked how long I hadworked at the medical center. I told her 20 years.The mother replied, “I knew it was you. Elevenyears ago my baby died here. You prayed withme and helped me get through a terrible time.My life is so much better now, but I will neverforget.” I cannot think of another job on thisplanet that would be more meaningful. I amawed every day to play even a small role inthe care that is offered at Cook Children’s.The scope of spiritual services at CookChildren’s is broad, thanks not only to staff andvolunteers, but to the generosity of financial andin-kind donors. Good people knit prayer shawlsfor mothers and quilt lap robes for teens. Theystitch teeny baptismal gowns, hand-tuckedgarments, and handmade linens for theincubators. A wonderful group at a Presbyterianchurch in Hurst makes “Lovies”, soft flanneldolls for use in our Neonatal ICU. When ourTransport Team picks up a newborn at a referringhospital, they give a Lovie to the mother. Themother rubs the Lovie against her skin to transferher scent, then that Lovie and the comfortingscent of the mom stays with her baby untilthey can be reunited.Individuals, congregations, school classes,and businesses donate about 12,000 newstuffed bears each year for use in our PrayerBearprogram. Five days a week, our pastoralvolunteers walk the hospital corridors, pullinga little red wagon filled with PrayerBears. Eachnew admission may choose one and hear thesewords of encouragement, “This bear comes toThe missionof Pastoral Careis to nurturethe spirit ofCook Children’s10 cook children’s promise – the magazine of Cook Children’sWinter 200811

I wish eachone of ourdonors couldhave beenpresent tohear how theirgifts can blessthe heart of ahurting child.you in love frompeople you havenever even metwho are prayingfor you.”In a recentchapel service onthe PsychiatricUnit, we weredistributingPrayerBears tothe children.A beautiful12-year-old girlsaid, “I didn’t know anyone would pray for me.I don’t think anyone’s ever prayed for me untilnow.” I wish each one of our donors could havebeen present to hear how their gifts can blessthe heart of a hurting child.Through our Staff Partner program, areacongregations or other groups may request tobe paired with a nursing unit. Once a weekor once a month, that group brings trays offinger foods for staff who often skip meal breaksto tend to the needs of a child. They smile atour nurses; they say, “Thank you for making adifference;” they may send them birthday cardsor pray for them. These community groups arean integral part of the Cook Children’s spirit,for “to encourage” someone is to pour courageinto that person.The chapel at Cook Children’s, with itsbeautiful needlepoint, priceless stained glass,and fine music instruments, is a gift from peopleof faith. The Prayer Garden and Labyrinth areThanksgiving PrayerWe give thanks for the awesome gift of life and theprivilege of living in a free nation. We give thanks forthose we love and those who love us. We speak theirnames, grateful for relationships that are ours by birth,by adoption, by choice, and by divine intervention.We remember those who, by death or by circumstance,are absent from our table but not from our hearts.We are grateful that they are forever in your care.We give thanks for good food and warm beds, forclothing and shelter, for safety and a sense of belonging.We thank you for all the ways that our bodies, our minds,12 cook children’s promise – the magazine of Cook Children’sgifts from generous friends. Our Walk of Honor,also a gift, is the first major tribute to organ andtissue donors by a children’s hospital. Ourchaplains nurture the spirit of Cook Children’s,a spirit that shines in many, many physicians,staff, board members, volunteers, and donors.That spirit also shines in the faces of courageousyoung patients and loving families. AtThanksgiving and every day, we are gratefulfor each one who graces our lives and ourwork here.Count your blessings!Ann Miller, Ph.D., LPC, LMFT, BCCDirector of Pastoral CareIf you would like to make a gift to helpunderwrite Pastoral Care, or other work atCook Children’s, contact the Cook Children’sHealth Foundation at 682-885-4105.www.cookchildrens.orgPastoral Care staffAnn Miller, Director of Pastoral CareSteve Irwin, Supervisor Pastoral CareTerry Shaw, Pastoral Care SpecialistPam Foster, Chaplain Interfaith MinistryPeggy Johnson, Chaplain Interfaith MinistryDoug Pace, Chaplainon-call ChaplainsTerry BoggsMichael DownsMichael HatcherJames HoodWilliam NashDavid Wallaceand our spirits are healthy. We rest in your faithful lovein all the ways that we are weak and vulnerable.May we work and give toward the day when all babiesare born healthy and all children grow up safe and nurtured,the day when all who are elderly know dignity and love,all who are sick or hurting receive care, all who have strayedare restored, all who are in conflict know peace, and allwho are lonely find friendship. Fill us with your spirit ofkindness until our hands are your hands, bringing healingto a broken world. May we offer not just words, but deedsof true thanksgiving.—Amenyes, there is a Santa ClausYou have probably heard of Bruce Wayne,the alter ego of Batman, but have you heardof Cook Children’s version of a superhero,Andrew Wayne? Our Wayne works for RE/MAXand is a certified real estate coach, ethics andlegal instructor who lives in Colleyville andhas lived in Northeast Tarrant County forover 40 years. He started playing Santa on awhim. He has taken his portrayal of the jollyfellow to a new level. What started as a favorto a friend is now a unique fundraising effortfor Cook Children’s.Wayne was first asked to “play” Santa for asmall group of kids twelve years ago. His friendhad a helicopter and flew him to an airplanehangar for the party. When they opened thehangar door, 700 smiling faces looked up andstarted shouting “Santa, Santa” and he washooked. After five or six years and many peopleasking him how they could repay him for histime, he came up with the idea to support hisfavorite cause – Cook Children’s.Now when he receives a request to puton the suit, Wayne asks that the individual orfamily make a donation to Cook Children’s.Last year Wayne raised $61,000 as Santa. That’ssome present. In total Wayne is responsiblefor thousands more dollars given to supportthe hospital.Donning the gear over the years has brought alot of joy to Wayne’s life. “I have a passion fordoing this,” Wayne said. And it’s not just forchildren’s parties. Every year Wayne also visitsa senior center holiday party. Last year a ladycame to sit on Santa’s lap and told him shehadn’t visited with Santa in 50 years. Waynedidn’t miss a beat, “Well, I’ve missed you.”They both got teary eyed.When asked what Santa wanted forChristmas this year Wayne replied, “He wants tomake sure all children have the ability to accesspremier healthcare. Santa doesn’t want any childto suffer. We can’t take away all of the pain butwe can make certain to bring a little joy andhope to sick kids and their parents.”Andrew Wayne certainly exemplifies thetrue giving spirit. Paraphrasing from the famouslines penned by Francis Church, “Yes, there is aSanta Claus. He exists as certainly as love andgenerosity and devotion exist, and you knowthat they abound and give to your life its highestbeauty and joy. Alas! how dreary would be theworld if there were no Santa Claus.” And atCook Children’s, we agree.For information about Santa visits, youdon’t even have to call the North Pole; Santa’slocal number is 817-366-6523.Winter 200813

Donor Dinner 2008celebrating Cook Children’s donorsleft to right:Robert K. Featherthanks the donors.Dr. Gary Cole,Jennifer Johnson,Barbara J. Harvey whounderwrote the eveningand Robert K. Feather.On a beautiful September evening, friendsand family of Cook Children’s gathered toacknowledge and honor a very special group ofpeople, our donors. People who, through theirgenerosity, have helped place Cook Children’son a path of excellence. People who believe inthe mission and the ideals that have setCook Children’s apart and raised the bar forproviding quality health care for the children ofthis area. People from different walks of life, allunited with a common vision, a shared dream,and a commitment to the well-being of thepatients of Cook Children’s.Mr. Rick Merrill, President and CEO ofCook Children’s Health Care System, began theevening with a quote from Winston Churchill,who said, “We make a living by what we get.We make a life by what we give.” Expressing hisgratitude, Merrill shared Cook Children’soverarching vision for the future, a vision thatwould not be possible without the support andcommitment of each of our donors. “CookChildren’s is dedicated to providing uncommoncare for every child, every day,” Merrill said.“As a direct result of your generosity, we’ve beenable to open neighborhood clinics to help carefor the children who need it the most – childrenwho don’t receive care on a regular basis andthe children who are homeless in Tarrant County.On any given day, we have staff that work withand provide transportation to our clinics forthe 120+ homeless children in Tarrant County.The message is clear, Cook Children’s caresabout the children of Fort Worth and ourpromise to them is real.”Promise…that’s a powerful word. At CookChildren’s, we don’t take promises lightly, whichis why our board, physicians and administrationdecided that our sole mission is to fulfill thispromise…Knowing that every child’s life issacred, it is the promise of Cook Children’s toimprove the health of every child through theprevention and treatment of illness, diseaseand injury.One of the extraordinary results of thispromise can be found in the neurosciencesprogram. As a result of our robust researchcapabilities and remarkable neurosciences team,a procedure has been instituted known as deepbrain stimulation (see full story on page 3).This procedure helps children suffering frommovement disorders such as dystonia. CookChildren’s is the only free-standing children’shospital in the country with a comprehensivemovement disorder program performing deepbrain stimulation on children. To date, our teamhas treated 16 dystonic children using thismethod. These children’s lives have been foreverchanged for the better. These are children whoare now able to walk, children whose arms nolonger writhe and flail about uncontrollably,children that will have a chance at a betterquality of life.Merrill concluded with another quotefrom Winston Churchill, “gratitude is not onlythe greatest of virtues, but the parent of allthe others.”“I am so thankful to have this opportunity tolook out into this audience and see the faces ofthose who are directly responsible for helping usfulfill our promise,” said Merrill. “I believe that apromise made, is a promise kept.”2008 honoreesJPMorgan ChaseAs a nationally recognized leader in thebanking community, with assets of $1.8 trillionand over 180,000 employees, JPMorgan Chasehas never forgotten that relationships are thekey to success. Cook Children’s and JPMorganChase have a special kind of relationship.A relationship that spans over half a century.A relationship where executives volunteertheir time and talent to serve as trustees on aCook Children’s board. Leaders who have givengenerously of themselves, investing their gifts oftime, resources, and energy all for the childrenin this community. Their goals are simple –be the catalyst to meaningful, positive, andsustainable change within our highest needin neighborhoods and communities acrossthe globe.Over a span of 23 years, JPMorgan Chase,through its Foundations, Charitable Trusts andCorporate gifts, has made $6.8 million in giftsto Cook Children’s. Through these charitableinvestments, JPMorgan Chase has made asignificant and extraordinary impact on thelives of children.The Ray and Ellen “Tommie” O’Neal FamilyRay and Ellen “Tommie” O’Neal began afamily business shortly after WWII. Together,they built A1 Rental into a thriving businessand, along the way, instilled in their childrena philanthropic spirit.Ray and his late wife, “Tommie”, whopassed away last year, have been good friendsto Cook Children’s over the years. They madea cornerstone gift which helped to finish thefourth floor of the North Pavilion in the MedicalCenter, which houses the Epilepsy MonitoringUnit and the Medical Surgical Unit. Through thegenerosity of the O’Neal family, many childrenare receiving top-level care.left to right:Robert K Feather,Rick Merrill,Bob Lansford,Danny Smith, Jeff Kingand Gary Walsh.left to right:Gary Walsh,Ray O’Neal,Nancy Cychol,Robert K. Feather.14 cook children’s promise – the magazine of Cook Children’s Winter 2008 15

check presentationsEECUPeter Pan Birthday Clubintroduces party in a box!Becoming a Peter Pan Birthday Club memberjust became so much easier! To help celebrateyour child’s birthday, we will provide a Party in aBox. Materials in the box include:Educational Employees Credit Union has held a golf tournament to directly benefitCook Children’s for three years. This year they presented Cook Children’s with$25,000 for the palliative care program.In photo: Everson Walls; Sue Matkin, Tarrant County Literacy Coalition and United Way;Lonnie Nicholson, CEO EECU; Connie Talmadge, Chief Retail Officer, EECU; Tim Plocica,Director of Development, Cook Children’s Health Foundation.KiwanisOn Oct. 8 the Kiwanis Club of Southlake presented a check to theCook Children’s Save a Smile (SAS) program. The presentation took placeat Timarron Country Club during their monthly meeting. This is the thirdyear that this club has donated funds to SAS.In photo: Dr. Tonya Fuqua, manager of the SAS program, and Curtis Green,president of the Kiwanis Club of Southlake.• Invitations to send to guests.• Either Wish List or Monetary Envelopes.Gift-giving options are to either collectmoney in monetary envelopes or, if yourchild is 8 and under, Cook Children’s willprovide a Wish List with specific toys thatguests may bring.• Thank you cards for birthday child to sendout to guests.joining the Peter Pan BirthdayClub is easy as wellJust follow the steps below:• Decide that your child is ready to makepatients smile by giving away birthday giftsor collecting money at the birthday party.• Designate whether your child will bedonating monetarily or through the WishList. Call 682-885-4103 and set up anappointment with Whitney Langdon to goon a tour of the Medical Center and receiveyour child’s Party in a Box.– Tour times: Tuesday 4 p.m. – 5 p.m,Thursday 4 p.m. – 5 p.m.• Send out invitations with either a Wish Listor monetary envelope.• Have a fabulous celebration!• Deliver monetary gifts or toys toVolunteer Services at the Medical Center.• Child may write thank you letters to each oftheir guests.• Child’s name will be publicly recognizedfor their participation.• Smile, knowing your child just changedtheir corner of the world.and the fun doesn’t stop there!In February there will be a BIG birthday bashfor all our Peter Pan Club Members. You won’twant to miss the fun!JESOn Sept. 3, Mrs. Jareen E. Schmidt of the J.E.S. Edwards Foundation, donated $17,500to Cook Children’s to be used for pediatric medical research. Since 2006, through theJ.E.S. Foundation and personal funds, Mrs. Schmidt has contributed $57,500 to help fundCook Children’s research efforts and the formation of Cook Children’s Primary CarePhysician Investigator Network (PCPIN). Located in Fort Worth’s Child StudyCenter in association with Cook Children’s Primary Care Downtown Office, PCPINis the only endeavor of its kind in Dallas-Fort Worth and leads a new era ofchild-specific medical research in Tarrant County.Front row (l to r): Medical Director of Clinical Research Jim Marshall, M.D.; Ginny Ciriot, CPNP;Jareen E. Schmidt; and Ann Natterer, M.D. Back row (l to r): Ronica Wright-Loewen, RN, BSN,CCRC; Desiree Harris, M.D.; Director of Financial Operations James Eagle, CPA; Shannon Dougrey,CPNP; Senior Grants and Contracts Coordinator Susan Caskey, MBA; and Manager, Grants andContracts Sudeepa Bhattacharya, MPA.Hochberger Auditorium chair plaquesSearching for the perfect holiday gift?Looking for a thoughtful way to honor orremember a family member, caregiver,co-worker or friend?Engraved plaques, which are placed onchairbacks in the Hochberger Auditorium, arestill available. Personalize your message and paytribute to someone special. With your $350 giftbenefiting Cook Children’s, we will engrave anindividual plate with your personalized messageand install it on a chair in the auditorium.If you are interested in participating, pleasecontact Karen Nichols at 682-885-7867.18 cook children’s promise – the magazine of Cook Children’s Winter 2008 19

’tis the season of giving holiday wish list 2008Year-end is a great time to make a charitablegift to Cook Children’s. Your donation does morethan benefit children; it perpetuates your valuesand commitment to assuring all children in ourcommunity have access to high-quality healthcare. Knowing that every child’s life is sacred,it is the promise of Cook Children’s to improvethe health of every child in our region throughthe prevention and treatment of illness, diseaseand injury.Your gift to Cook Children’s, by December31, can also bring you added tax benefits.Federal tax laws make it possible to reduce oreliminate taxes on funds you give for charitablepurposes. For example, because funds used tomake charitable gifts are deducted fromthe amount otherwise subject tofederal income tax, when youitemize your deductions,you may be able togive more than youthought possible.The amount andtiming of yourcharitable gifts arecompletely withinyour control. Thisis why each yearmillions of Americanstake advantage of theopportunity to makecharitable gifts whilealso reducing theirtax liability.gifts of cashWhile allgifts mailedor otherwisecompleted byDecember 31qualify for taxdeductibility for2008, gifts made bycash or check are themost popular ways togive. Please be sure to seeif your company has amatching gift program.Your donation may bematched from yourcompany and/ororganization based on pre-establishedformulas and limits.save more when you giveother assetsMaking gifts of stocks, bonds, and/or mutualfunds also can bring tax savings. When makinga gift of securities, please check with yourfinancial provider to ensure that your gift iscompleted properly and in a timely manner. Youshould allow additional time for gifts of mutualfund shares or non-publicly traded securities.give from your IRAIf you are over the age of 70½, Congress hasmade it possible to make tax-free gifts directlyfrom an Individual Retirement Account (IRA)before the end of 2008. Giving in this wayassures that these funds will never be subjectto income or estate tax.leaving a legacyToward the end of each year, many peoplealso choose to review their long-range estateand financial plans. Wills, life insurance,retirement accounts and other planning vehiclescan offer special ways to leave a lasting legacyto Cook Children’s. There are also ways toprovide for meaningful future gifts whilegenerating income, immediate tax savingsand other benefits today.When making financial decisions for youand your family, it is best to check with yourfinancial advisor for the options that will workbest for you. For more information, you cancontact Cook Children’s Health Foundationat 682-885-4105.dear community friends,Thank you so much for sharing your giftsof toys and love with the patients at CookChildren’s. We generally provide gift bags formore than 200 children on Christmas morning.“Santa” delivers these treasures to the children asthey sleep. We depend on friends like you tomake this happen! We generally receive 75% ofour toys for the entire year during the holidayseason. In addition to helping children duringthis season of caring, your gifts may also be usedas birthday presents for children hospitalized ontheir birthday, toys for our playrooms andpatient bedrooms throughout the year, andspecial prizes after an especially painful or scarymedical procedure. Here are a few of the itemswe need most during the holiday season:• Infant and Toddler Toys and Gifts(layette sets, lullaby CDs, shape sorters,“light up” or musical toys, rattles andsqueeze toys; there is a great need foritems for those under 1 year)• Preschool Toys (Mr. Potato Head, RescueHeroes, Play-doh, Viewmasters, “LittlePeople” toys, etc.)• Board and Card Games (especially gamesfor those 8 years old and older; forexample: Life, Sorry, Trouble, Connect Four,Jenga, Cranium, Uno, etc.)• Teen Gifts (scrapbooking sets, nail polishsets, collectable cars, frames, holiday or“fun” pajamas and pillow cases, gift cards,sporting goods, disposable cameras, CDplayers, etc.)• Craft Kits and Supplies (spin art, fuzzyposters, model cars, Home Depot woodkits, beading kits, paint-by-numbers, etc.)• Stamps and Phone Cards (so families canstay in touch with loved ones at home)• CDs and tapes (lullabies, children’s music,music for teens)• Video games or DVDs• Gift cards to “teen friendly” locations likeOld Navy, Best Buy or Sonic• Personal electronics (CD players, alarmclocks, MP3 players, etc.)• Clothing for children and adults (loungepants, underwear, socks, t-shirts, etc.)Cook Children’s Medical Center is registered forholiday gifts and programming supplies at thefollowing stores. Wish lists are accessible on-lineor in the stores.donation guidelinesTargetTarget List“Organization”Cook Children’s• All donated items must be new.This is important, since many childrenhave illnesses that make them moresusceptible to germs.• Unwrapped (no gift wrapping) packages areappreciated! This makes it much easier tomatch the right toy with the right child.• Since we are unsure of the beliefs of eachfamily, we do not distribute toys with atheme that may be perceived as violent(guns, swords, bows and arrows, etc.).• We only use “G” and “PG” movies andvideo games with an “E” rating.• We cannot distribute any CDs with a“Parent Advisory” label.• We have families with many different beliefsystems, so it is important that donationsnot be religious in nature or content.• The following may not be included indonation: latex balloons, food or candy.• All fliers must be approved byCook Children’s.delivering giftsBabies ‘R Us“Mother’s Name”First Name: CookLast Name: CMCGifts may be delivered to the Information Deskat Cook Children’s from 8:00 a.m. – 8:00 p.m.,Monday through Friday. They may be deliveredon weekends from 10:00 a.m. – 6:00 p.m.If you would like to set up an appointmentto deliver your items, please contact Kat Davitt atthe number listed below.Due to privacy, safety and infection controlissues, gifts may NOT be delivered directly tothe patients.Questions?Kat Davitt MOT, CCLS, OTRCommunity Program ManagerChild Life Department682-885-4241katd@cookchildrens.orgWal-Mart“Wish List”First Name: CookLast Name: CMC24 cook children’s promise – the magazine of Cook Children’s Winter 2008 61

Aflac holiday duckAflaaaac! For the fourth consecutive year, Cook Children’s will be the beneficiaryof proceeds from the sale of Aflac holiday ducks. The holiday duck will be availablestarting November 1 in participating Macy’s department stores and online atwww.aflacholidayduck.com. The Holiday Duck is dressed to thrill even the mostfinicky shoppers in its wintry garb, and it is likely to soar off of shelves.Since 2005, Aflac has sold thousands of ducks, raising over$45,000 for Cook Children’s hematology/oncology department.If making a monetary contribution, please contactthe Cook Children’s Health Foundation at 682-885-4105.801 Seventh AvenueFort Worth, Texas 76104-2796Cook Children’s Health FoundationNONPROFITORGANIZATIONU.S. POSTAGEPAIDFORT WORTH, TEXASPERMIT NO. 2401Change service requested