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also insideWinter 2010

HANDPRINTSCHILDREN’S

A PUBLICATION OF CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND

KEEP THE EXTRA HOLIDAY SUGAR AT BAY Healthier alternatives you can make at home with your kids

KEEP THE EXTRA HOLIDAY

FALL 2012 childrenshospitaloakland.org

CHOOSING A HEALTHCARE PLANThe Healthcare Benefi t Exchange can make choosing a healthcare plan easier

CHILDREN’S IS 100Children’s Hospital has launched its two-year-long centennial celebration

www.childrenshospitaloakland.org

APPOINTMENTS925-979-40002401 Shadelands Dr.Walnut Creek

PEDIATRIC SERVICES•Orthopedic•Diagnostic Imaging•Outpatient Surgery•Lab Draw

PEDIATRIC SPECIALISTS ONSITEEndocrinology•ENT•Nephrology/Urology•Neurosurgery•Nutrition•OccupationalTherapy•Orthopedics•Plastic&HandSurgery•Psychiatry•PulmonaryMedicine

CHILDREN’S HOSPITAL OAKLAND’S

WALNUT CREEK CENTER

APPOINTMENTS 925-988-0100100 N. Wiget Lane, Suite 200Walnut Creek

510-428-3558744 52nd St.Oakland

CHILDREN’S HOSPITAL OAKLAND’S

SPORTS MEDICINE CENTER FOR YOUNG ATHLETESREHABOFSPORTS-RELATEDINJURIESINCHILDRENANDADOLESCENTS

SPORTSPERFORMANCEENHANCEMENT

INJURYPREVENTIONTECHNIQUES

NOW OFFERING:INFANT & CHILD CPR COURSESLearn skills that could save a child’s life

Dates:Nov.19,2012&Jan.14,2013Location: 2401 Shadelands Dr., WCRegister:www.bitly.com/cpr-wc

James Keefe, Chair

Melba Muscarolas, Vice Chair

Arthur D’Harlingue, MD, Treasurer

Michael LeNoir, MD, SecretaryRena BrantleyThomas V. Bret, Esq.

Jeff rey CheungMatthew CoxHarold DavisWatson Laetsch, PhDLouis LavigneJames Levine

Leslie LittletonBertram Lubin, MDAlexander Lucas, PhDBetty Jo OlsonHitendra Patel, MDEdward Penhoet, PhD

Ori SassonShahan SoghikianHarold C. Warner, PhDRichard Whitley, MDJamie Bertasi Zerber

CHILDREN’S HOSPITAL & RESEARCH CENTER OAKLAND BOARD OF DIRECTORS

Table of Contents4 PERSPECTIVE Children’s pediatrician Gena Lewis,

MD, shares her thoughts on healthy food choices on KQED 88.5 FM radio’s “Perspectives” program.

5 LETTER FROM THE PRESIDENT & CEO

6 HAPPY BIRTHDAY Children’s Hospital’s 100th Birthday

Party at FairylandOur 100th birthday party was the offi cial kick-off to our two-year-long centennial celebration.

8 100 YEARSThe Branches

Recognizing the crucial contributions of this very special group. Written by Paula Lykins.

William Jenkins, MD A tribute to a trailblazer. Written by

Jerome Gentes.

10 ASK AN EXPERT ECG screening for athletic kids.

11 KIDS CORNERTry your hand at logic puzzle #5.

12 RESEARCH UPDATEChildren’s Hospital Invents New Nutrition Bar

The CHORI-bar may help restore nutritional balance for those with poor diets.

Research Powerhouse in the East Bay

California voters helped create collaboration among Children’s Hospital Oakland, UC Berkeley, and the Lawrence Berkeley National Laboratory.

17 WHAT’S NEW A Family’s Gift to Fight Cancer

The John and Edna Beck Chair for Pediatric Cancer Research will help children with cancer in future generations.

21 ADVOCACY Choosing a Healthcare Plan Is Getting

Easier. Really! The Healthcare Benefi t Exchange will

help you pick the healthcare plan that’s right for you and your family. Written by Bernardette Arellano.

24 AUTUMN SWEET TREATS Children’s Hospital’s nutritionists have

created sweet recipes to please trick-or-treaters and pilgrims alike.

27 YOGA FOR KIDSDo this simple yoga move with your child to improve fl exibility, and coordination.

28 GIVING BACKA gift of care and comfort: The Edward W. and Yuri H. Chin Refl ection Room at Children’s Hospital Oakland.

Carson Palmer, Oakland Raiders quarterback, visits Children’s Hospital.

How Southwest Airlines is helping relieve the burdens of patient and family travel.

Introducing Betsy Biern, SVP and Chief Development Offi cer.

30 VISIONING SESSION 2012 Children’s hosts its fi rst community

“Visioning” event to get input on the hospital’s building plans.

14 Young Boy’s Courage Inspires Those Around HimChildren’s cancer patient, Ashton, loses part of his leg—but not his incredibly inspiring spirit. Written by Susie Caragol.

114

22 Have No Fear!Child Life Is Here!Children’s child life specialists change how kids feel and think about medical care. Written by Susie Caragol.

22

18 Solving the Medical Mystery of Gillian’s Disease Children’s diagnosis of Gillian’s rare condition proves critical to her cure. Written by Susie Caragol.

118

Children’s HandPrints is a publication of Children’s Hospital & Research Center Oakland, 747 52nd Street, Oakland, CA 94609; 510-428-3000.

Bertram Lubin, MDPresident and Chief Executive Offi cer

Marketing Communications DepartmentCynthia ChiarappaVice President, Strategy

Tina AmeyAdministrative Assistant

Debbie DareGraphic Design Services Manager

Erin GoldsmithMedia Relations Manager

Kevin KimbroughMarketing Manager

Michele RepineWeb Content Manager

Erika SandstromSenior Graphic Designer

Contributing WritersBernardette ArellanoSusie CaragolClinical Nutrition DepartmentJerome GentesLisabeth KirkGena Lewis, MDPaula Lykins

Contributing PhotographerAlain McLaughlin

The medical information contained in this newsletter should not be substituted for advice from your child’s pediatrician.

If you do not wish to receive future issues of this publication, please email to [email protected] your name and address as they appear on the mailing panel.

If you’d like to write to the editor of Children’s HandPrints, please send an email to [email protected].

HANDPRINTSCHILDREN’S

4 CHILDREN’S HANDPRINTS FALL 2012 • www.childrenshospitaloakland.org

www.childrenshospitaloakland.org

We know that obesity is an epidemic in America.

But what may not be as obvious is that obesity and hunger are linked. The same overweight child I see in my pediatric practice at Children’s Hospital & Research Center Oakland is often hungry, too.

Recently, a pediatrician-in-training came to me troubled by a mother and three children, all overweight. In taking their history, it was clear that the family diet had lots of junk food and few fruits and vegetables.

The new doctor was frustrated that this mother wasn’t creating a healthier environment for her kids. But when we dug deeper, the mother told us that when their food stamps ran out, the family would go up to a week without meals. In fact, they hadn’t eaten that day.

We gave them two bags of groceries. The mother burst into tears. The kids examined the bag to see what was for dinner. And the new doctor learned that healthy food is a luxury.

Combating hunger isn’t just about calories—it’s about enabling access to nutritious food. With three hungry children and no money, would you buy cheap,

calorie-dense fast-food meals to keep little tummies full? Or broccoli that won’t even make one meal?

What angers me is that taxpayer dollars underwrite that bad choice. Federal farm policy lavishly subsidizes high-fructose

corn syrup and other elements of highly processed foods while categorizing things like broccoli and apples as “specialty crops” that receive pitifully small help, if any. Currently, the farm bill that has passed the Senate makes a dent in this inequity, but an inadequate one. The House bill is even worse when it comes to funding nutrition programs like food stamps. Billions more in cuts there are likely while crop subsidies survive, thanks to powerful lobbyists.

With much less each month in food help, that hungry, obese family is likely to keep buying cheap, fi lling, and unhealthy food. And those kids are on a path to hypertension, diabetes, and other obesity-related diseases.

My hope is that our leaders will understand that they are responsible for the obesity epidemic and that they can fi x it, too.

With a Perspective, I’m Dr. Gena Lewis.

On August 8, 2012, KQED 88.5 FM radio’s “Perspectives” program aired Children’s pediatrician Gena Lewis, MD, and her thoughts on healthy food choices.

HEALTHY CHOICES Healthy food is a luxury for the poor, and taxpayer subsidies are part of the problem.

The “Perspectives” radio series features daily listener commentaries since 1999. To hear Dr. Lewis’s commentary, go to www.kqed.org/a/perspectives/R201208080735.

PERSPECTIVE

Dear Friend and Neighbor,

On September 8, Children’s hosted our 100th birthday party at Children’s Fairyland, and it was truly a day to remember.

It was not only memorable because of the hundreds of families that came out to celebrate with us, but also because of the incredible team spirit that was all around. It reminded me why our hospital has continued to grow for the past century.

Throughout the day I ran into patients I treated over 25 years ago when I was a practicing hematologist at Children’s. I saw former medical residents, now married and with their own children, who came out with their families to enjoy the day. Several physicians who have spent most, if not all, of their medical professional lives working at Children’s came to meet up with their former colleagues and to record their memories for a special retrospective video we are producing.

As always, it was a joy to see current and former patients attend, too. Fortunately, I ran into Felix and his family at the party. Felix, an oncology patient, has shared his story in the upcoming Annual Report. I thank the many families who have shared their experiences—all essential to our 100-year record as the only independent, not-for-profi t hospital in the Bay Area devoted 100 percent to pediatrics.

The birthday party served as the offi cial kick-off to our two-year-long centennial celebration. Be sure to see our timeline retrospective, as well as learn about upcoming events, by going to www.100amazingyears.org.

Happy 100th birthday, Children’s Hospital!

Bertram Lubin, MDChildren’s Hospital & Research Center OaklandPresident & Chief Executive Offi cer

CHILDREN’S HANDPRINTS FALL 2012 • Donate at www.childrenshospitaloakland.org 5

A WORD FROM

DR. LUBINPRESIDENT & CEOPRESIDENT & C

For more centennial information, go to www.100amazingyears.org

former medical residents!

org

felix and his family


HAPPYBIRTHDAY

CHILDREN’S HOSPITAL’S 100TH BIRTHDAY PARTY

ROCK STAR SPONSORSROCK STAR SPONSORS

In 1912, a group of women voted at Berkeley’s Town and Gown to form a baby hospital in the East Bay. In September of 1914, The Baby

Hospital offi cially opened its doors. In honor of these two historical milestones, the hospital has offi cially started its two-year-long centennial celebration.

On September 8, 2012, hundreds came to Children’s Fairyland in Oakland for Children’s Hospital’s 100th Birthday Party. Visitors were entertained with Fairyland rides and shows, as well as musical performances, children’s author readings, and specially set up tables with free birthday treats from several Bay Area companies.

Special thanks goes to the KFOG Local Scene artists who donated their special performances: Rudy Trubitt, Shane Turner, Forest Sun, Zach Rogue, and Asheba—and to the authors who read to the audience—Jennifer Holm, Jon Agee, Marissa Moss, and Annie Barrows.

To see photos of the party and learn more about the centennial events, go to www.100amazingyears.org.

Our centennial celebration has offi cially started

The Launch Party


HAPPYBIRTHDAY

Previous page: Oaklandish designed original tees just for Children’s Hospital; the front entrance; The Peter Pan Foundation characters greeted partygoers at the entrance; visitors learned CPR from the Lake Merritt Medical Unit; KFOG’s Renee Richardson, Ingrid Serban with musician Forest Sun, musician Zach Rogue, New York Times best-selling author Kelly Corrigan, and musician Asheba; Bernie Peyton taught the fine art of folding; Waddles the Duck high-fived a young visitor; Zach Rogue got a surprise duck visit from his daughter, who slipped on the costume backstage; Kelly Corrigan with her daughter, Oakland Mayor Jean Quan, and Children’s President & CEO Bertram Lubin, MD; Annie Barrows read from her “Ivy and Bean” series; stage banners; YMCA hosted a table offering special YMCA giveaways.

This page: The climbing wall offered a challenge for the adventurous; volunteers who helped at the event were affectionately called the “Duck Crew”; Critters came out to entertain the kids; the YMCA and Children’s Sports Medicine Center for Young Athletes lead the crowd in a zumba exercise; the wooden cake was decorated with notes written by well-wishers; Waddles in the conga line saying hello to watchers; volunteers sold mini-cupcakes for the birthday toast; Children’s Gail Seche, MMSc, RD, CSP, staffed the nutrition table to promote healthy eating; the musicians that lead the conga line parade around the park; one of the notes on the cake; Oakland Firemen came out with their fire engine; partygoers in costume; Team Shimmy at the party; Rudy Trubitt, got the crowd dancing and singing with him.


100YEARS

In 1912, united around Bertha Wright, RN, and social worker Mabel Weed, a group of East Bay women were behind the hospital’s funding, creating a network of support to ensure its future. For generations since, Children’s Hospital has owed its existence to the

passion, foresight, and hard work of these women. The Branches, as they’re known, raise funds to support our day-to-day operations, help

us uphold our mission to care for all children regardless of ability to pay, and have enabled innovative programs to grow and thrive.

Today, the Branches have over 700 active volunteers. From owning and operating the Bambino Thrift Shop in Oakland to throwing the Hill Branch Debutante Ball—which raises hundreds of thousands of dollars each year—the Branches are a fundraising force that makes our good work possible.

To learn more about The Branches, Inc., visit www.childrenshospitalbranches.org, or call 510-428-3355.

As we launch into our centennial celebration, it’s an ideal time to refl ect on the crucial contributions of one very special group

The Branches

The Baby Hospital Association of Alameda County was, in the phrase of a later day,

“a happening.” It was the spontaneous result of the deliberate mixing of a number of strong personalities and interesting ideas. No one could have foreseen the form the group would take or the pattern of its development.

In a time of non-rapid transit, the ladies who attended the fi rst two meetings concerning the Hospital were separated by the geography of the County but united by college background, a sense of social responsibility and, of course, womanhood—they cared about babies. The concern triumphed over distance and slow transportation. The membership got together regularly during the gestation period of the Hospital, even though the Association had grown too large for convenience.

The original members used a chain-letter method for their fi rst membership drive. Each charter member held a party to recruit four other women, with the understanding that each new member would hold a similar recruiting party, and so on through six cycles.

“The Baby Hospital of Alameda County,

California, for the care of sick babies without regard to creed, nationality or race, with which is affi liated the Certifi ed Milk and Baby Hygiene Committee, Association of Collegiate Alumnae, endorsed by the Commission of Public Charities of Berkeley” was formally incorporated on April 24, 1913. Legally the property was held and managed by the nine-man Board of Directors but in practice the directors were relatively inactive, serving mainly as occasional advisors to the all-female Board of Managers, who ran things.

Even before the Hospital, which they had conceived, came into physical existence, the women were planning ways to nurture it. Financing, they realized, would require a new approach. The mass meetings of Association membership were cumbersome; many attended but few could participate. If the women were not to lose interest, decentralization was necessary.

On January 6, 1914, the executive committee of the Board of Managers happened to be having tea at the home of the Association’s new president, Mrs. McDuffi e. A visitor at the meeting, Mrs. G.H. Haushaulter

of Rochester, New York, mentioned that in her hometown several women’s groups—they called themselves “twigs”—met the defi cits of the Rochester General Hospital by holding an annual fund-raising fair in which the units competed to see which could raise the most money. The idea took hold immediately, though with confi dent one-upswomanship, the Baby Hospital Association members decided to call their guilds not “twigs” but “branches.”

“The Hospital Women Built for Children” Excerpt by Murray MorganPublished in 1967

1914: Members of the Hill Branch, one of the original Branches formed when the Hospital first opened, still exists today.

1911914


He was a husband, father, and grandfather as

well as the National Medical Association 2001 Doctor of the Year. His given name was William Morris Jenkins, but to many he was simply “Bill.” To thousands of East Bay children and parents, and to hundreds of Children’s Hospital medical residents over many decades, he was “Dr. Jenkins,” and, as someone recently remarked of his gifts as thinker and caregiver, “the best

combination of Mr. Spock and Dr. Spock I know.” In other words, Dr. Jenkins, who recently passed away at age 83, was as intelligent as Star Trek’s science offi cer and as widely respected and beloved as the 1950s author and pediatrician.

Born in Greensboro, North Carolina, in 1929, Dr. Jenkins attended Atlanta’s Morehouse College, where he sang in the glee club as a featured soloist and graduated in 1953. He received his Meharry Medical College diploma in 1957.

He came to Children’s Hospital Oakland three years later to complete his residency—the fi rst African American to do so in that pre-Civil Rights Act era.

Over the next half-century, Dr. Jenkins was one of the most dedicated and respected pediatricians and medical educators in the region and the nation, an invaluable asset both to Children’s Hospital and to his profession. He cared for over 1 million patients and provided uncompromising pediatric services to tens of thousands of underserved children. As Children’s Hospital CEO Dr. Bert Lubin recently attested, Dr. Jenkins “practiced ‘personalized medicine’ before it hit the broader world.” Dr. Melanie Tervalon of Children’s Outpatient Department, who was one of his students, agrees. “He didn’t just treat kids. He cared for them.”

Besides that of Dr. Tervalon, the professional lives of hundreds of doctors and residents at Children’s were shaped and informed by Dr. Jenkins—such as those of Dr. Pam Simms-Mackey and Dr. Barbara Staggers. Dr. Simms-Mackey says, “Just think about how many residents and patients came through Children’s during his career.” Dr. Staggers, one of several former patients who later became his student, learned “the art, the ever-changing science, and ever-changing business of medicine” directly from him. “He instilled three things in me:” she explains, “a passion for medicine and patients, a commitment to advocacy for children and community, and a sense of legacy—the awareness that you have to leave something behind.” Counting Dr. Jenkins’s former residents at a recent gathering, Dr. Lubin agreeds: “His impact has lasted. And will last.”

It will last not simply because Dr. Jenkins treated his patients and educated his students in his own remarkable way. It will also last, as recently announced, thanks to the Bill Jenkins Center for Minority Health and Health Issues at Children’s Hospital Oakland, which will preserve his remarkable legacy for generations to come.

Dr. Dayna Long, a Children’s pediatric specialist, applauds this tribute. “No one can fi ll his shoes,” she says, “but I intend to pass his practices on, both to new doctors and those in need of care.”

100YEARS

William Jenkins, MDA tribute to a trailblazer

1

1926: Groundbreaking for a new hospital. Enjoying the proceedings are Mrs. George R. Lunn, center (her husband was President of the Hospital), Mrs. R.A. Wilson (left), and Mrs. H.H. Bower (right).

1955: The Nearly New Shop in San Leandro opens on May 6, 1955, but moves to bigger quarters on the same street in September. It’s affectionately called “Magnin’s of Ashland.”

1975: For the first time since 1961, a new group joins the other 62 Branches and calls itself the Cacao Branch. It has 33 members. The chair is Della Simpson, Children’s Sickle Cell Center co-founder and assistant.

Shopping at the Bambino Thrift Shop benefi ts our kids! 5290 College Ave. Oakland • 510-658-7473Tues. to Fri., 10 a.m.–3 p.m., Sat. noon–4 p.m. Donations of used items accepted during business hours. Be sure to check out their holiday specials and schedule for the ultimate deals! www.bambinothriftshop.org

Calling all Branches members, past and present! Children’s Hospital & Research Center Foundation would like to honor the Branches members. A special event is being planned for Spring or Summer 2013, and we want to include every one of the women who have contributed to our success to be invited. Unfortunately, many Branches members have fallen off our records, so we need your help: If you know anyone who is a former Branches member, please send us her contact information. Please send any contact information to:

Kevin Hughes, Director of Gift PlanningChildren’s Hospital & Research Center Foundation2201 Broadway, Suite 600, Oakland, CA 94612Phone: 510-428-3860 • Email: [email protected]

5

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19


Children’s Hospital’s

Whiz KidsASK AN

EXPERT

If you have a question you’d like to ask, email [email protected].

“My kid is really active and plays just about every sport. I keep hearing about ECG screenings and athletes. Should my kid get an ECG screening?”

As of July 2010, the American Heart Association, the American Academy of Pediatrics, and the American College of Cardiology do not recommend an ECG as part of the routine pre-participation sports exam. Children’s approach has been to perform targeted studies on a case-by-case basis.

Ask your child’s pediatrician if your child should have a ECG screening. To help determine if a screening is necessary, Children’s Heart Center has created a cardiovascular screening tool that your child’s pediatrician can use. For those pediatricians that do not perform ECGs in their offi ces, Children’s pediatric cardiologists are available to perform and/or interpret ECGs. Please have your child’s pediatrician contact us at 510-428-3380.

—Children’s Cardiology Department


PROBLEM: The following shapes equal the numbers

1, 2, 4, and 6.

Can you fi gure out which symbols match up with which numbers so that this math problem works?

LOGIC PUZZLE #5

Submit your answer, and if it’s correct, you’ll win a prize. If you send in a photo of you holding the solution, you might be in the next issue! Send your answer by Nov. 16 to: CHILDREN’S HOSPITAL OAKLAND, COMMUNICATIONS DEPT., 747 52ND ST., OAKLAND, CA 94609

NAME___________________________________________AGE________

ADDRESS____________________________________________________

CITY_________________________________ZIP____________________

Noah and Olivia from Brentwood; Dora from Castro Valley; Marielle from Concord; Irfaan, Kristi, Lindsey, Trisha, Aneri, and Catherine from Fremont; Tanvi from Edison, NJ; Amrita and Maribeth from Moraga; Hillary from Oakland; Astrid and Phoenix from Orinda; Ajit, Megan, Pooja, Ryan, Samridhi, Suchit, and Trinity from Pleasanton; Anna from Rohnert Park; Akshat, Anika, Derek, Evan, Jonathan, Katrina, and Aaron from San Ramon; Agnes from Hayward.

Special recognition goes to Gail Roll, age 73; Kate Frankel, age 86; Norma Yaglijian, age 90; and Agnes Slade, age 92, for their correct answers.

Thank you all for your entries!

ANSWER

Congratulations to everyone who answered the quiz correctly!

KIDS CORNER

LOGIC PUZZLE #4 Each empty white square in the grid contains one of the numbers 1, 2, 3, 4, 5, 6, 7, or 8. Each of the horizontal and vertical equations must be true, and each number must be used exactly once. Fill in the numbers.

÷

+

=

+ =

= =

x

6 2 3

1 4 5

7 8

0= _____

= _____

= _____

= _____AN

SW

ER


RESEARCHUPDATE

Scientists at Children’s Hospital Oakland Research Institute’s (CHORI) Nutrition & Metabolism Center, led

by National Medal of Science winner Bruce N. Ames, PhD, have developed a low-calorie, fruit-based, high-fi ber, -vitamin, and -mineral nutrition bar called the “CHORI-bar” that improves biological indicators linked to risk of cardiovascular disease, cognitive decline, and associated decline in antioxidant defenses.

The CHORI-bar is intended to help restore optimal nutritional balance in people with poor diets, and to help transition them to healthier eating habits. The bar is satiating and, at only approximately 110 calories per bar, may be helpful in weight reduction programs.

The fi rst research report on the CHORI-bar appears in the August 2012 FASEB Journal (the Journal of the Federation of American Societies for Experimental Biology), published online on May 1, 2012 (www.fasebj.org/content/early/recent).

Low intake of many vitamins and minerals is widespread in the U.S. After years of studying the interactions of vitamins and minerals with metabolic processes, Dr. Ames became convinced that modest defi ciencies could be contributing to metabolic imbalances that increase risk of diseases associated with obesity and aging, such as diabetes, cancer, and heart disease.

In 2003, Dr. Ames and his colleague Mark Shigenaga, PhD, whose research focuses on the impact of food on gut function, embarked on the development of the CHORI-bar, an economical, low-calorie, food supplement that could restore metabolic balance. Intestinal health is now widely recognized to be an important determinant of overall health. Food components that benefi t gut health, such as certain soluble fi bers and polyphenols, also defi cient in typical Western diets, were included in the bar, along with a number of other ingredients—all aimed at helping to restore optimal nutrition. Dr. Ames assembled a team of scientists, and a collaboration was initiated with the Processed Foods Unit at the United States Department of Agriculture, Agricultural Research Service in Albany, Calif., to assist in the production of a tasty and nutritious bar. The prototype bar trial developed in this program was also led by CHORI-bar team member and pediatric cardiologist Michele Mietus-Snyder, MD.

Twenty-fi ve generally healthy adult participants varying in age and BMI participated in the study, eating two bars each day for two-weeks. Impressively, favorable metabolic changes occurred after only two-weeks of bar intake. Increased HDL cholesterol was reported after intake of several individual bar ingredients, but at much higher doses than what is present in

the bar. The possibility that bar ingredients are acting additively or synergistically is supported by some preliminary evidence.

Two examples from the results of this trial emphasize the fact that with the right mixture of food components, pharmacological doses are not needed to move metabolism in a healthy direction.

Current research is continuing on several fronts: Two additional bars have been developed in order to expand the repertoire of the CHORI-bar to include progress on the fronts of insulin resistance, infl ammation, and additional elements of lipid metabolism, notably LDL cholesterol. Efforts are also under way to combine attributes of all three bars in a single bar.

Children’s Hospital Invents New Nutrition BarNew nutrition bar developed by CHORI scientists may help restore nutritional balance for those with poor diets

The CHORI-bar TeamBruce Ames, PhDSenior Scientist

Joyce McCann, PhDAssociate Scientist, Ames Lab

Mark Shigenaga, PhDSenior Scientist, Shigenaga Lab

ORIGINAL CHORI-BAR FLAVORS:White Chocolate Blueberry

Cocoa Dusted Chocolate

Espresso White Chocolate

Fruit White Chocolate

CHORI-bar prototype.


RESEARCHUPDATE

In 2004, the people of California approved bond initiative Proposition 71, which authorized the allocation of $3 billion to support stem cell research and the development of stem

cell-based therapies in California. As a result, the Berkeley Stem Cell Center was established, bringing together investigators at Children’s Hospital Oakland Research Institute (Children’s Hospital Oakland’s research center), UC Berkeley, and Lawrence Berkeley National Laboratory in a collaborative, creative, multidisciplinary research environment that is centered on stem cell research and the development of stem cell-based therapies.

Children’s Hospital, a national leader in cord blood stem cell research and transplantation for treatment of genetic and malignant blood disorders, performs basic and translational research on:

• cancer and cancer stem cells;• tissue engineering for stem cell culture and transplantation; and• the use of cord blood stem cells in treatment of inherited and

malignant blood disorders.

Within the center is the California Institute for Regenerative Medicine (CIRM). CIRM’s training program develops creative and productive scholars who bring to their work a thorough understanding of the biological, engineering, ethical, and legal complexities surrounding stem cell research, as well as a shared commitment to the application of stem cell biology and engineering to the improvement of human health.

The program provides training for clinical, postdoctoral, and pre-doctoral fellows in molecular biology, bioengineering, or related scientifi c disciplines. Clinical fellows are appointed through CHORI, with a focus on post-residency training to expand the clinical applications for cord blood stem cell therapies. Postdoctoral fellows’ primary appointments may be at UC Berkeley, CHORI, or Lawrence Berkeley National Laboratory. Pre-doctoral fellows may be affi liated with any relevant science or engineering department at UC Berkeley.

Children’s is proud to be partnering with these nationally esteemed institutions. For more information, go to stemcellcenter.berkeley.edu.

CHILDREN’S HOSPITAL OAKLAND RESEARCH INSTITUTEAmong the leading biotech enterprises in the Bay Area, CHORI has had over 86 patents issued and over 200 inventions disclosed. In addition to providing world-class research, CHORI is also a teaching institute, off ering unique educational opportunities to high school, college, doctoral, and post-doctoral students.

FAST FACTS ABOUT CHORI• Has over 315 scientists and an annual budget of

over $50 million• Created the fi rst not-for-profi t sibling donor

cord blood program in the world• Developed fi rst cure of alpha thalassemia major

in North America• Has the world’s largest recombinant DNA library• Provided 85 percent of the genes used in the

Human Genome Project

RESEARCH STUDIESwww.bitly.com/CHORIresearchstudies

Finding cures for debilitating diseases or developing new treatment options happens with the help of people just like you who volunteer, or volunteer their children, to participate in a clinical study. Please explore the possibilities of volunteering for a clinical study being conducted at CHORI.

Research Powerhouse in the East Bay California voters helped create 2004 collaboration formed by Children’s Hospital Oakland, UC Berkeley, and Lawrence Berkeley National Laboratory


People around the world were inspired this summer by Oscar Pistorius, a South African Olympian nicknamed

the “Blade Runner,” who made it all the way to the semifi nals in the 400-meter competition racing on his special carbon-fi ber-blade artifi cial legs. No one was more inspired than young Ashton Carter, who lost one of his legs this year to a rare form of bone cancer. Yet for the physicians, staff, and other patients around him at Children’s Hospital Oakland, it’s Ashton who was inspirational.

“Ashton is a wise, mature little guy,” says Carla Golden, MD, who served as his primary oncologist at Children’s. “I also admire his family. His parents were honest and straightforward with him up front, so he knew the ‘bump’ in his leg was cancer. The family did a lot of research and really prepared him well. I was impressed with his questions about what his treatment would be and whether he would lose his leg. Throughout it all, he was an amazing kid, which really speaks to the kind of family he has. They were always supportive and loving, and they encouraged him to

focus on the positives. I get so much out of working with kids like Ashton and their families. It’s inspirational for me.”

Ashton was only 8 years old when his race against cancer began in September 2011. He started experiencing pain in his leg, just below the knee. That didn’t seem unusual at fi rst for an athletic, active kid like Ashton. As the pain persisted and grew more intense, his parents, Kristine and Matt Carter, became increasingly concerned.

“Ashton was waking up at night crying,” Kristine recalls. “He didn’t want to go to school because of the pain. We went to his regular pediatrician, who thought it might just be a sprain and recommended taking ibuprofen. A week later, we went to the emergency room at our local hospital in Livermore because the pain was even worse. When an X-ray showed what looked like a tumor, they sent him for an MRI, which showed the tumor more clearly.”

Ashton was scheduled for a biopsy to determine if the growth was cancerous. When the fi rst biopsy was inconclusive, the orthopedic surgeon performed a second biopsy.

Getting Off to a Quick Start on Treatment

“On October 5—I will always remember that day—the orthopedic surgeon called us with the diagnosis of cancer and referred us to Children’s Hospital,” Kristine says. “Dr. Golden was able to get us in for an appointment within a couple of days and explained what it was and what the course of treatment would be. He had his fi rst round of chemotherapy on October 14.”

Ashton’s cancer was osteosarcoma, which often starts near the ends of the long bones in the legs, including the part of the lower leg bone next to the knee. Like other

CANCER C E N T E R

Young Boy’s Courage Inspires Those Around Him

“Working with kids isn’t sad,” says Dr. Hoppe. “They bring us a sense of joy. And working with Ashton allowed us all to grow in a positive way. He’s made us better doctors.”


CANCER C E N T E R

cancers, osteosarcoma can spread beyond the bone into nearby tissues or through the blood to other bones or organs, so starting treatments right away was critical.

“Osteosarcoma can be diffi cult to treat, especially if it is metastatic,” explains Carolyn Hoppe, MD, one of several oncologists who assisted in Ashton’s care at Children’s whenever he was admitted for inpatient treatments. “Fortunately, Ashton’s cancer was localized and didn’t involve the knee joint, so surgical removal of the tumor was a good option. Before surgery, we had to use chemotherapy to shrink the tumor.”

Kristine describes Ashton’s chemotherapy regimen as “pretty grueling,” noting that he went through several months of chemo prior to surgery, as well as several more months of chemo after surgery to kill any cancer cells that might still remain in his body and spread elsewhere.

“He would be in the hospital on chemo most of the week for three weeks in a row,” she says. “He also had to stay at the hospital over the weekends and for a couple of days after the last treatment to make sure the chemotherapy agents had cleared enough from his body to go home. Then he would get a two-week break at home, followed by another round of chemo. I had to take a leave of absence from work to be with Ashton in the hospital and care for our two younger sons, Julian and Nolan, who were affected by his cancer, too.”

Rounding the CornerDr. Golden acknowledges that a long

course of chemotherapy can be rough for a kid. “At fi rst, Ashton tried to stay upbeat, but over time he got discouraged,” she says. “He got incredible support, though, from his family, the child life experts at the hospital who explained all the procedures to him, the staff psychologists, the oncology nurses, his teachers, and his friends. After about a month of rough hospitalization, he started to turn the corner emotionally. He started doing yoga in his bed, laughing and entertaining everyone.”

Dr. Hoppe agrees that the child-friendly environment at Children’s was a plus for Ashton. “The treatment protocol

for Ashton’s cancer would be basically the same at any other hospital, but we recognize we’re not treating ‘mini-adults.’ Because everything here is geared to kids, they get the special attention they deserve. People often ask me, ‘Isn’t it sad working with kids?’ But working with kids isn’t sad; they bring us a sense of joy. And working with Ashton allowed us all to grow in a positive way. He’s made us better doctors.”

“Over the course of his initial chemotherapy, we discussed the surgical options for Ashton,” says Dr. Golden. “At fi rst, after meeting with their orthopedic oncologist, Dr. Rakesh Donthenini, his family was considering ‘limb-salvage’ surgery in which the tumor and a small amount of adjacent healthy bone are removed and replaced by an internal prosthesis. In a young child who has not completed his growth, that might have caused some problems because that leg wouldn’t grow the same as the other leg, and he most likely would need additional surgeries along the way. Also, with the internal prosthesis, his activity would have been more limited, since running and many other sports could displace or damage the prothesis. It was a big decision.”

Ashton’s parents involved him in the

discussions of surgical options, too. “We evaluated the pros and cons of limb-salvage surgery vs. amputation, and decided that amputation and an artifi cial ‘bionic’ leg would be better for him,” Kristine notes. “While limb-salvage might have given him a more natural-looking leg, Ashton would have a more diffi cult time running and jumping, which was an important consideration for an athletic kid.”

The amputation was re-scheduled for February 2, after more chemotherapy. Deciding to approach the surgery in a positive way, Ashton’s family held a special “farewell to cancer” party before the operation, with everyone signing his leg and saying “goodbye” with their usual spirit of optimism.

The day of the surgery, Ashton went into the operating room around 1 p.m., and was done at about 10 p.m. “It was a long day for the surgeon—and for us,” Kristine says. “Fortunately, there were no complications from the surgery. Five days after the surgery, they allowed him to go home. The doctors even allowed us to take him and the other kids to Santa Cruz for a few days to have a bit of fun before starting chemotherapy again two weeks after surgery.”

Heading to the Finish LineAshton went back to the same

regimen of three weeks on, two weeks off

Ashton showing his scars from the surgery; Goofing around with Child Life Specialist Suzanne Berkes, MA, CCLS. Previous page (l-r): Beverly Lowe, MSW; Suzanne Berkes, MA, CCLS; LynAshley Gildar, PsyD; Marianne Ohlson, RN; Molly Selfridge, RN; Ashton Carter; Kristine Carter; Carla Golden, MD.


CANCER C E N T E R

chemotherapy. Throughout his many months of treatments, Ashton continued to impress people with his intelligence and good spirits.

Molly Selfridge, NP, the nurse practitioner who cared for him from the fi rst day he was admitted for treatments in October, notes: “From the fi rst night, I knew Ashton was going to be someone special. He is what I call an ‘old soul.’ He is very wise for his age. I can’t imagine an adult—myself included—handling the loss of a leg with such a level of maturity.

“Ashton has been inspiring for all of us,” Molly adds. “All on his own, he picked up the practice of yoga, which helped provide a sense of comfort and reassurance that he could still do physical activity when he lost his leg. He comforted and gave advice to his roommates, reassuring them that they would be OK. Kids like Ashton are why we do the work we do at Children’s. I feel blessed that I got to play a role in his care.”

“I took a yoga class when I was in kindergarten, but I didn’t like it much then,” Ashton recalls. “But when I was stuck in the hospital bed with tubes going everywhere, I decided to try yoga again. I just made up moves to stretch my body. I even put my thigh from the leg that was amputated behind my head!”

In addition to doing his yoga exercises, Ashton kept busy with various activities at the hospital while he was there for his chemotherapy treatments.

“For having to be in a hospital, it was a good experience,” says Kristine. “They have so many programs for the kids and a

great playroom. When he didn’t feel like going to the playroom, they brought him art projects to do in his

room. They also had a social worker who awarded him “beads of courage,” which are colored beads to add to a string each time

he went through a procedure. He now has a garland of beads that must be at least fi ve feet long. We’re planning to use it to decorate our Christmas tree.”

Ashton fi nally fi nished his last round of chemo in June and was allowed to go home on Father’s Day. Soon after, he was fi tted for his new “bionic leg.” For the fi rst time in months, Ashton was able to look down and see two legs and two feet.

“It was exciting to get a leg again— I’m so happy to have a leg!” Ashton says with joy. “We had a lot planned for the summer, so I could just forget about the chemo. I can’t believe it’s fi nally over!”

The week after July 4, the family took their fi rst-ever trip to Disneyland, courtesy of the Make a Wish Foundation, which supports children who have faced a life-threatening illness. Ashton was particularly excited to ride on Space Mountain. “What

I loved about it was that it was dark and mysterious inside,” he says. “You were going really fast and you couldn’t tell what was coming up next.” The family also visited Knotts Berry Farm and California Adventure.

And then came the Olympics, with Ashton’s hero Oscar Pistorius making history. “He was amazing to watch!” Ashton exclaims. “It was so cool that he was able to run like that with two prostheses!”

Now 9 years old and heading into fourth grade, Ashton is looking forward to seeing his “friends” at Children’s.

“While I really can’t say I enjoyed the experience at the hospital, the people there were very friendly, and they took good care of me,” Ashton says. “I really liked all the nurses and doctors. I’ve already gone back to visit them, and I’m sure I’ll do it again.”

Are the Olympics in Ashton’s future, too? Nurse practitioner Molly observes: “Could Ashton ever run in the Olympics? If any kid could do it, Ashton would be the one.”

For more information about Ashton’s race against bone cancer, please go to www.gofundme.com/Ashtons-cancer.

Marianne Ohlson, RN, gives Ashton a bead for his Beads of Courage necklace.

Ashton’s newfound interest in yoga got us thinking: Yoga for Kids! Check out a simple yoga pose you can do with your kids on page 27.

(l) Children’s Online Communications Manager Michele Repine shows Ashton a new yoga move.

Children’s Hospital was one of the fi rst hospitals in the country to adopt the Beads of Courage program. Patients are awarded a bead for each procedure or treatment milestone they endure. Since the program’s inception seven years ago, 453 kids have participated at Children’s.

Becky Bauer is the picture of health—a beautiful, athletic teen heading off to college at Duke

University. But Becky wasn’t always the healthy young woman you see today. Ten years ago, when Becky was 8 years old, she was diagnosed with leukemia and treated at Children’s Hospital Oakland. Her mother Hope remembers a visit to her pediatrician’s offi ce, with Dr. Evans-Ramsey asking if Becky was always so pale. A blood test was performed in the pediatrician’s offi ce, and they were immediately sent to Children’s Hospital Oakland to admit Becky to the hospital.

At Children’s, Becky was diagnosed with leukemia, and the Bauers recall feeling relieved. Hope explained, “We had been well informed about two possible diagnoses and what each diagnosis might entail.” Becky’s dad Bruce adds, “Leukemia was the less serious of the two. Once we had the diagnosis confi rmed, we knew what was ahead, and although it wasn’t always easy, we remained confi dent we could beat this.”

Becky vaguely recalls her time at Children’s; what she does remember are the programs that helped pass the time. “I remember doing art in my hospital bed and really looking forward to having them come and work with me.” Becky also recounted how her favorite stuff ed animal, an elephant named Stinky Ellie, remained with her and brought her comfort throughout the entire ordeal. (She still has Stinky Ellie!)

“Because Becky was so attached to Stinky Ellie, the staff would let her take that thing everywhere, even into surgery. Once she was under anesthesia, out would come Stinky Ellie. Then before she awoke the nurses made sure to put Ellie back into Becky’s arms, as if they’d never been separated,” explains Hope.

Becky has been cancer-free ever since her treatment at Children’s Hospital. “We are so grateful for the care we received from Children’s Hospital,” says Becky’s dad Bruce.

It was that gratitude, shared by the Bauers’ close extended family, that inspired a gift from the family’s Aunt Edna and Uncle John. The Becks had no children

of their own but shared deeply in the lives of their nieces and nephews, one of which was Bruce Bauer. “They were a dynamic couple,” remembers Bruce, “interested in everything and everybody, always asking questions, wanting to learn about you and your ideas. They shared a real passion for knowledge. They were always up-to-date on the world around them—and even to the end, sharp as a tack.” John Beck passed away in 2005, and Edna in September 2010, each living close to a century. To honor Becky’s care, the Becks left a gift to Children’s Hospital to establish The John and Edna Beck Chair for Pediatric Research at Children’s Hospital Oakland Research Institute (CHORI).

In May, the family of John and Edna Beck gathered at CHORI for the dedication of the Endowed Chair given to Senior Scientist and Director of the Center for Cancer Research Julie Saba, MD, PhD. The Becks’ Chair supports vital research aimed at identifying critical cancer-related genes, developing new strategies for early detection and prevention, designing novel drugs and better drug delivery methods, and enhancing the eff ectiveness of existing therapies by fi nding ways to reverse drug resistance in cancer cells and protect normal tissues from the therapy side eff ects.

Dr. Saba started her career as a pediatric oncologist at Duke University Medical Center and has since become a leading pediatric cancer researcher. Saba explains, “As a physician, it was rewarding to cure many of my patients of their cancers. However, there were some families that we couldn’t help. I couldn’t bear it—I just couldn’t look into the eyes of another parent and explain that there was nothing we could do and that their child would succumb to their illness. That’s why I became a cancer researcher. And even though medical research has brought the

overall cure

rate for childhood cancers to about 85%, it isn’t good enough. I don’t want any parent to lose a child to cancer,” explains Dr. Saba.

Bruce explains, “Aunt Edna was proud to leave this legacy to help children with cancer everywhere for generations to come.”

For more information about CHORI Cancer Research, go to www.chori.org.


WHAT’S N E W

A Grateful Family’s Gift to Fight Cancer The John and Edna Beck Chair for Pediatric Cancer Research

(l-r) The late Edna and John Beck; John and Edna Beck’s great niece Becky was treated for leukemia at Children’s a decade ago and has been cancer-free ever since; Eight-year-old Becky Bauer during her cancer treatment at Children’s Hospital Oakland with her beloved stuffed animal Stinky Ellie. which was at her side throughout treatment.

In May, the nieces and nephew of John and Edna Beck gathered at Children’s Hospital Oakland Research Institute for the dedication of the John and Edna Beck Chair for Pediatric Research presented to Senior Scientist and Director of the Center for Cancer Research, Julie Saba, MD, PhD.

(l-r): Sally Bauer Doerr, Bonnie Bauer, Dr. Julie Saba, Becky Bauer, Hope Bauer, Bruce Bauer, Nancy Bauer Gearhart.


MYSTERY SOLVED

Anyone who has ever watched an episode of the TV show House knows that diagnosing an

unusual illness requires a lot of detective work. Fortunately for Gillian Navarroza, Children’s Hospital Oakland had physicians on staff who knew how to fi gure out her mysterious disease.

The mystery began, oddly enough, on Halloween in 2011. While other little kids were celebrating the holiday, Gillian was having an unexpected seizure that lasted for a half hour. The family rushed the 2-year-old to the emergency room at their local hospital in Reno, Nevada. The doctors gave her an anti-anxiety drug to calm her and ordered a CT scan to try to determine the cause of the seizure.

“It was really shocking for our daughter to have a seizure, since she had never had one before,” says Gillian’s mother, Darling Navarroza. “The doctors couldn’t fi gure out what caused the seizure because the CT scan didn’t provide any answers.”

The mystery deepened the night Gillian got home and developed a fever.

“We gave her Tylenol, as our doctor recommended, and the fever came down,” Darling recalls. “But the next day, Gillian was walking funny—she was uncoordinated and kept falling over. I took her to our pediatrician for a check-up, and he suggested just keeping an eye on her. She just kept deteriorating every day, slowly losing her mental abilities and motor skills. Finally, on Veteran’s Day, she lost her ability to speak, so we rushed to the ER. Because it was a holiday and they had no one available to perform an MRI, they arranged an emergency medical fl ight to Children’s Hospital in Oakland.”

“Gillian was experiencing severe movement disorders, with her whole body twitching and jerking,” says Ann Petru, MD, an infectious disease specialist at Children’s. “There were dramatic changes in other behaviors—she was drooling and she couldn’t chew. She made no response

to eye contact or verbal commands, and she couldn’t speak. Because her CT scan in Reno and her MRI here at Children’s were both normal, our search for other clues began.”

Gillian had been at Children’s Hospital before. In March 2010, when she was just 6 months old, her family pediatrician in Reno referred her to Children’s after a CT scan showed the presence of some unusual growths in her skull. At Children’s, an MRI scan and a biopsy confi rmed a diagnosis of Langerhans cell histiocytosis (LCH), a rare condition that occurs when the body accumulates too many of a type of white blood cells—Langerhans cells—that normally help the body fi ght infections.

That previous stay at Children’s lasted only two weeks, after which she was sent home to Reno to receive chemotherapy, followed a few months later by radiation treatments at Alta Bates Hospital in Berkeley. A week after the last round of radiotherapy in August 2011, CT and

Solving the Medical Mystery of Gillian’s DiseaseAccurate diagnosis of rare condition proves critical to her cure

Gillian’s diagnosis eluded other hospitals, but “Dr. Petru knew right away,” says Darling, Gillian’s mother.


bone scans showed no signs of any other LCH lesions.

This time, after she was admitted in November 2011, Gillian would remain at Children’s for seven months.

The Importance of Keeping Up with Medical Discoveries

“We suspected encephalitis, an infl ammation of the brain that usually results from an infection caused by a virus, such as herpes, West Nile, or enterovirus,” Dr. Petru explains. “All her tests for various viruses came back negative, though. Also, viral encephalitis usually is characterized by sleepiness and seizures, whereas Gillian’s extreme movement disorders and dramatic psychiatric symptoms are more common with another type of encephalitis that was not identifi ed until 2005—anti-NMDA receptor encephalitis.”

Even though anti-NMDA receptor encephalitis was identifi ed very recently, Dr. Petru was familiar with it and had made the correct diagnosis before in several earlier cases.

“Physicians who are not familiar with this condition might not think of this possible diagnosis and would not do the right tests,” she notes. “The disease is caused when the body’s immune system produces antibodies that attack receptor cells of neurons in the brain. It most frequently has been diagnosed in young women with ovarian tumors, where there is neurologic tissue present in the tumor. The body tries to get rid of that tissue by making an antibody against the tumor that also goes to the patient’s brain. The resulting brain infl ammation causes movement and psychiatric disorders. In Gillian’s case, though, there were no

ovarian tumors, and we do not believe it was related to her previous LCH.”

To confi rm Gillian’s diagnosis, Dr. Petru sent blood and spinal fl uid samples to both the Mayo Clinic and the lab of the world’s leading expert in the disorder, Josep Dalmau, MD, PhD, in Barcelona, Spain. Although the Mayo Clinic test result was negative, the suspicion was high and the results from Spain fi nally arrived the week before Christmas. In Dr. Dalmau’s laboratory Gillian tested highly positive for the antibody that causes the disease.

The Long Road to Recovery“In treating Gillian’s disease, we started

with the most conservative therapies,” says Dr. Petru. “The fi rst step was to try steroids to reduce the infl ammation in her brain. Next, we tried intravenous immune globulin (IVIg), which contains healthy antibodies that help destroy the damaging antibodies in the blood. Then we tried an immunotherapy drug called rituximab, which is used to shut down the ‘factory’ that makes the damaging antibodies. When those treatments had limited success, we tried a procedure called plasmapheresis, which essentially fi lters the blood to remove the unwanted antibodies.”

Gillian’s plasmapheresis treatments began on February 1, 2012, and by the

end of the month she was showing strong signs of improvement. On March 24, she had her last plasmapheresis treatment and was transferred to the Intensive Rehabilitation Unit after showing remarkable improvements.

Coincidentally, while Gillian was undergoing her treatments, a teenage girl came into the emergency room at Children’s with similar symptoms. Because the medical residents knew about Gillian’s case, they immediately tested the teenager for anti-NMDA receptor antibodies, and she was diagnosed within 48 hours with the same disease. “In the teenager’s case, we found an ovarian tumor, which was removed within 72 hours of her presentation,” says Dr. Petru. “She improved after removing the tumor, but it took her three months to recover completely.”

With her own disease under control, Gillian began intensive rehabilitation with physical, speech, and occupational therapy under the supervision of Christine Aguilar, MD, a pediatric physiatrist at Children’s.

“Gillian had spent the past fi ve months going through treatments to control her disease,” says Dr. Aguilar. “When kids regress like she did, they lose their physical strength, coordination, and refl exes, and she still couldn’t speak or communicate at all.

“Our goal was to get her back to normal function for a child her age. It was like starting all over at the infant stage,” Dr. Aguilar explains. “At fi rst, we just wanted to get her to roll over and eventually crawl—essentially gaining the mobility of a 4-month-old. We also had to teach her how to eat again because she had been on feeding tubes and hadn’t eaten for several months. She had a very intensive rehabilitation regimen every day except Sunday, with two rounds of physical therapy, two rounds of occupational therapy, and one round of speech therapy.”

Turning Rehabilitation Work into “Play”

In addition to Dr. Aguilar and the physical, occupational, and speech

MYSTERY SOLVED

Who Gets Anti-NMDA Receptor Encephalitis?Several studies confi rm that anti-NMDA receptor encephalitis occurs in patients without ovarian tumors or other types of cancer, and that men and boys also can be aff ected. A recent article in the medical journal Clinical Infectious Diseases notes that increasing numbers of anti-NMDA receptor encephalitis cases have been presented to the California Encephalitis Project (CEP), and the frequency of the disorder now rivals that of viral causes of encephalitis. Of the anti-NMDR receptor encephalitis cases identifi ed by the CEP, 65% occurred in patients under age 18, and females were aff ected nearly three times more often than males.

Gillian’s previous stay at Children’s to treat a blood disease lasted two weeks. This time, Gillian would be at Children’s for seven months.


MYSTERY SOLVED

therapists, Gillian was cared for by Nancy Showen, MD, a pediatric hospitalist who works with rehab patients. “We see a lot of severely affected kids who need intensive rehabilitation, but Gillian’s case was unusual in that she was hospitalized for so long before coming into rehab,” she says.

“Early on, Gillian had a hard time, and she got frustrated easily,” Dr. Showen recalls. “The therapists worked hard at making her rehabilitation fun, though, and it became more like ‘play’ than work for her. Working in rehabilitation for children requires a different skill set than working with adults. Therapists have to know how different medical conditions affect kids differently than they do adults. Also, while they need to make the child work on improving her skills, it has to be done creatively to make it seem like playing, so she will participate more enthusiastically.”

Within the span of two months, Gillian was able to walk while holding onto her mother’s fi ngers. She had regained her ability to communicate verbally and was feeding herself. Finally, on June 1, she was allowed to go home. Dr. Showen notes that when she saw Gillian a little over a month later, the toddler was walking all by herself.

“Gillian’s long illness and recovery was like a nightmare for me and my husband Gene,” says her mother, Darling. “After all, this is my baby! But every day she improved seemed like a miracle, and we are so grateful for the amazing staff at Children’s Hospital. She still does outpatient rehab therapy here in Reno, but now she is able to enjoy a more normal life—playing and laughing and crying like other kids. It was a long, hard struggle for her, but the strongest person I know is Gillian.”

COPING WITH A CHILD’S LENGTHY HOSPITALIZATION: A MOTHER’S ADVICEPediatric hospitalist Dr. Nancy Showen remarks: “Gillian had an awful disease, but she also had an amazing family to support her. They were the greatest thing Gillian had going for her.”

Since father Gene had to work, he was only able to go to Oakland from Reno on the weekends. So the heaviest burden fell on Darling, who stayed with Gillian nearly the entire seven months she was hospitalized, living in the Family House at Children’s. Hoping that her experience may help other parents who face having a child hospitalized for a long period, she off ers these helpful suggestions:

• Rely on the support of the hospital staff . They are there to help the parents as well as the children with emotional and psychological support.

• Talk with other parents, and get involved in the support groups off ered at the hospital. Sharing your experiences helps reduce your stress and sense of isolation.

• While you are caring for your child, don’t forget to take care of yourself, too. Exercise and eat well to keep up your energy and relieve stress.

• Take everything a day at a time, and be prepared for whatever happens. Don’t dwell on the “what if”s.

• Don’t be afraid to express your emotions around supportive people. It’s OK to cry.

• Accept off ers of help from your community. We had friends who held fundraising events and led eff orts to raise awareness about the disease.

• Maintain your relationships with your spouse and family members. You’re all in the same struggle.

• Focus on the positives, and never give up.

Keeping an Internet journal also helped Darling cope with Gillian’s illness and long hospitalization. To learn more about their story, go to www.caringbridge.org/visit/gilliancatenavarroza.

Gillian here seen with physical therapist Jessie Martin, DPT, had an intensive rehabilitation regimen of physical, occupational, and speech therapy. Children’s turns these therapy sessions into “fun” so that our patients relearn physical skills through play.


ADVOCACYchildren’shealthcare law watch

Choosing a health insurance plan can be a confusing and frustrating exercise for many people. In California, starting in January 2013, we will be hearing more about a new tool to help individuals choose a health insurance plan. The 2010 Patient Protection and Affordable Care Act (PPACA)included a provision that created a state-based Health Benefi t Exchange and tax credits for individuals with income up to 399% of the federal poverty line purchasing healthcare through the Exchanges. Health Benefi t Exchanges are intended to function as marketplaces to help consumers compare and contrast health insurance plans, making the selection of a plan that fi ts your individual or family needs easier.

California is an early adopter of a Health Benefi t Exchange: Shortly after the passage of the PPACA, the state enacted its own authorizing legislation and began designing its exchange. To date, the Health Benefi t Exchange in California has hired permanent staff, has begun the design of a web-based eligibility and enrollment portal, and is designing a process to select qualifi ed health plans to be offered through the Exchange. The state will begin a marketing, outreach, and public education program in 2013 to raise awareness about the Exchange. It is estimated that, in California, approximately 1.7 million uninsured individuals will be eligible for Exchange coverage with subsidies, and 1.2 million will be eligible for Exchange coverage without subsidies.

The Health Insurance Exchanges and other insurance market reforms have the potential to radically change the way millions of Californians access and purchase their healthcare. Webinars and information about the different elements of the California Health Benefi t Exchange can be found at www.healthexchange.ca.gov/pages/default.aspx.

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The advantagesAlthough the Exchanges will only be open to individuals and very small businesses for the fi rst few years, if properly designed and implemented, this system will provide individual contractors and small businesses an excellent opportunity to compare and contrast health insurance plans in an open and transparent manner. Insurers participating in the plans will not be permitted to refuse to insure anybody, prices of plans will be limited, out-of-pocket expenses are limited, strict limits on rescissions will be enforced, and lifetime and annual limits are eliminated.

How to stay informed

Choosing a Healthcare Plan Is Getting Easier. Really!

Why this matters toyou

www.healthexchange.ca.gov/pages/default.aspx


WALNUT C R E E K

Little 2-year-old Emma Opet’s fear of hospitals and doctors’ offi ces wasn’t totally unreasonable. At age 1, she

had been experiencing eating and sensory aversion issues and poor weight gain. After a series of tests and imaging scans, she was diagnosed with heterotaxy syndrome, a condition where the internal organs are arranged abnormally. In Emma’s case, her stomach is located on the right side of her abdomen and her liver is on the left, which is the reverse of normal body anatomy. She also has multiple spleens, while most people have only one.

“Emma had been through so many tests and medical procedures that she got scared anytime she saw someone wearing a stethoscope or medical jacket,” says her mother, Madeline (Maddy) Opet. “In August 2011 she had to have surgery to

see if her intestines were twisted. We had the surgery at a hospital in Contra Costa County where they didn’t have specialists who help prepare kids emotionally for surgery. I wasn’t allowed to accompany her into the operating room before she went under anesthesia.”

Emma recovered well from the surgery and got a good diagnosis on her intestines, but the experience added to her anxiety in medical settings. Her fears dissolved, though, once she met Child Life Specialist Christy Johnson, CCLS, MSW, at Children’s Hospital Oakland Outpatient Surgery Center in Walnut Creek.

Because Emma still was doing poorly with weight gain in April 2012, her pediatric gastroenterologist, Dr. Susan Jeiven, scheduled an endoscopy at the facility in Walnut Creek.

“I basically do all of my outpatient procedures at the Children’s Walnut Creek site,” Dr. Jeiven notes. “It’s a beautiful, child-friendly facility, and all the nurses and staff are terrifi c. Plus, the fact that they have a child life specialist on staff there makes the whole outpatient surgery process much easier for the patients, their families, and physicians.”

Child life specialists are child-development experts who focus on the psychological, social, and developmental needs of children to ensure that life remains as normal as possible for children in healthcare settings. These highly trained professionals prepare children for medical procedures or treatment with age-appropriate medical education in language that is easy for children to understand. They also help children develop effective

Have No Fear! Child Life Is Here!


WALNUT C R E E K

coping skills through play therapy and self-expression activities.

A certifi ed child life specialist, Christy also earned a bachelor of science degree in family studies/child development and a master’s degree in social work. The only child life specialist in Contra Costa County, she has been with the Children’s outpatient surgery site in Walnut Creek since October 2011.

“When Emma arrived in our pre-op area, she started screaming,” Christy says. “She was fearful of the medical staff, so I went in to see her fi rst. I was wearing my scrubs so I could go into the operating room with her later, and I told her they were my ‘silly green pajamas’ so she would feel more at ease with other people in scrubs. I sat down on the fl oor with her and showed her toy equipment similar to the equipment we use—a blood pressure cuff, the fi nger clip that measures vital signs, and a stethoscope. Then I let her use the equipment on a doll, her mom, herself, and me. This type of play helps teach kids about the medical environment and procedures and supports effective coping techniques.

“Once Emma was comfortable playing with the equipment, the nurse came in to take her vitals,” Christy continues. “Then I used a picture book that describes the ‘sleepy medicine’—anesthesia—that we would be using and showed her the ‘sleepy mask’ and let her play with it. I always make it a point to talk to children in everyday, age-appropriate language, not in complicated medical terminology, which is good for the parents and any siblings, too.”

While still in the pre-op room, Emma

and Maddy met with the “sleepy doctor” (anesthesiologist), the pre-op nurse, the surgical nurse, and Dr. Jeiven.

“By the time I arrived to perform the endoscopy, Emma had already calmed down,” says Dr. Jeiven. “It helped that Emma already knew me and was comfortable with me, but Christy and the rest of the staff are extremely good at screening patients and preparing them and their families for all types of procedures. The entire staff is exceedingly accommodating and professional. They go fi ve steps beyond what’s necessary.”

Once Emma was ready for surgery, Christy and Maddy accompanied her to the procedure room and stayed with her while she was put under anesthesia. Then Christy escorted Maddy to the comfortable waiting area for parents and siblings, bringing Maddy back to the recovery room to be with Emma when she awoke after the procedure.

“It was a great relief to be able to accompany Emma to the procedure room and stay with her until she was under

anesthesia,” Maddy says. “I sang her a lullaby and held her hand until she was asleep. They even gave Emma a blanket from Project Linus to take into the procedure room and wake up with it in the recovery room. She now plays with it

at home, wrapping her dolls in it. None of that happened at the other hospital where they just took Emma away to the operating room without any sort of child-friendly preparation.”

Christy notes: “I’ve worked in a variety of medical settings, and Children’s Walnut Creek facility is one of the most amazing child- and family-focused places I’ve seen.”

“The child life service isn’t something I expected, but I am so grateful for it,” Maddy adds. “I’m also thrilled that Emma is making great strides now in overcoming her eating and

sensory aversion issues in the food therapy program at the Walnut Creek site. Emma now walks in confi dently and looks forward to her visits and is ready to eat. It has made a signifi cant difference in her eating issues. The people at Children’s outpatient center in Walnut Creek really took care not only of my baby, but of me, as well.”

“Our goal is to make the process of preparing for surgery fun for the kids. Child life specialists can support children in many other medical settings. With this kind of positive healthcare experience, kids can continue to apply the coping skills they have learned when they face other medical situations in the future.” –Child Life Specialist Christy Johnson, CCLS, MSW

Children’s Walnut Creek Center2401 Shadelands Dr., Walnut Creek925-979-4000

To read other families’ stories about their experiences at Children’s Walnut Creek Center, visit www.bitly.com/yelpchildrenswc. To tour the center, go to www.bitly.com/Shadelands.

Child life services are available at Children’s Oakland and Walnut Creek sites.

To learn more about the Child Life Council, go to www.childlife.org.


Autumn Sweet Treats

Crisper air, cooler nights, and falling leaves…These

telltale signs of autumn can only mean Halloween

and Thanksgiving will be here soon! Costumed

goblins, ghosts, superheroes, and princesses may

be knocking at your door. A few weeks later, friends

and family will gather for a meal to give thanks.

Fall is the season of tricks, treats, pies, and sweets—

but eat too many, and soon YOU may feel like the

stuff ed turkey!

Avoid the decadent dishes and opt for healthy (but

still sweet and satisfying) choices available this

season. Fall is a time to celebrate the last bounties

of summer’s harvest: deliciously crisp apples and

pears, tangy cranberries, and a wonderfully wacky

assortment of pumpkins and gourds that grow in

every color, shape, and size.

Just in time for the fall holidays, Children’s

Hospital’s nutritionists have created some

“spooktacular” tasty treats sure to please trick-or-

treaters, and pilgrims alike. Enjoy these healthier

swaps of the traditional classics!

FOODCORNER

by CHILDREN’S HOSPITAL CLINICAL NUTRITION DEPARTMENT

INGREDIENTS1 15 oz. can 100% pumpkin puree

4 tablespoons Splenda Sweetener (about 8 packets)

1 tablespoon cinnamon

1 teaspoon nutmeg

½ cup heavy whipping cream

6 apples

½ lemon, squeezed, juice reserved

DIRECTIONS

1. In a large bowl, combine pumpkin puree, Splenda, and spices. Mix until well combined.

2. In a separate chilled bowl or standing mixer, whip cream until it doubles in volume and soft peaks form.

3. Gently fold whipped cream into pumpkin mixture until combined; do not over-mix. Cover and transfer bowl to refrigerator until ready to serve.

4. Wash and core apples, and then slice into wedges. Toss with lemon juice to prevent browning as you work. Transfer apple wedges to a platter and serve with chilled dip. Serves 8-10 hungry haunters.

FOODCORNER


INGREDIENTSAbout 12 cups popped popcorn (1/3 cup kernels, air-popped, or 2 no-salt/no-oil added microwave bags such as Bearitos or 365 Everyday Value

Butter-fl avored cooking spray

½ cup plus 1 tablespoon powdered cocoa mix (cocoa sweetened with sugar or sugar substitute may be used)

3 teaspoons cinnamon

DIRECTIONS

1. Put popcorn in a large bowl and lightly spray with cooking spray.

2. In a small bowl, combine cocoa and cinnamon; sprinkle over popcorn.

3. Toss to coat evenly. Spray and toss again until mixture is well coated.

4. Enjoy immediately. Serves 6-8 munchy monsters.

Adapted from the Popcorn Board, www.popcorn.org

squeezed, juice reserved4. Wash and core apples, and then s

browning as you work. Transfer aServes 8-10 hungry hauntersServes 8 10 hungry haunters.


INGREDIENTSFor fi lling:

1 cup fresh cranberries (about ½ the bag)

5-6 ripe pears, cored and diced

¾ cup granulated sugar

½ cup fresh squeezed orange juice

½ teaspoon cinnamon

¼ teaspoon allspice

For topping:

¼ cup brown sugar, packed

2 tablespoons all purpose or whole wheat fl our

1 teaspoon grated orange zest from fresh orange (see above)

¼ cup butter, cut into small cubes

1 cup oatmeal

½ cup chopped walnuts

DIRECTIONS

1. Preheat oven to 350 degrees. Lightly spray a two-quart square baking dish with cooking spray.

2. In a large bowl, mix cranberries, pears, sugar, orange juice, and spices until combined; spoon into prepared dish.

3. In a medium bowl, combine brown sugar, fl our, and orange zest; then cut in butter until crumbly. Stir in oatmeal and nuts until well mixed. Sprinkle mixture over fruit.

4. Bake 50 minutes or until topping is browned. Let stand about 10 minutes before enjoying. Serves 6 grateful gobblers.

Adapted from www.yummly.com

INGREDIENTS3 cinnamon apple teabags (such as Celestial Seasonings or Bigelow)

3 cups water

1 cup apple cider

2 cardamom pods

5 cinnamon sticks

DIRECTIONS

1. Bring 3 cups of water to a boil, and then add teabags. Remove from heat and steep for 5 minutes. Remove teabags and return to heat.

2. Add cider, cardamom pods, and 1 cinnamon stick. Simmer 5 minutes to infuse fl avors.

3. Strain out spices. Pour into cups and garnish with remaining cinnamon sticks. Serves 4 thirsty turkeys.

m

FOODCORNER

Shot at The Studio, in Danville, Calif.


First Bay Area Yogathon is a Success

STin

YOGAFOR KIDS

Children derive enormous benefi ts from yoga Physically, it enhances their fl exibility, strength, coordination, and body awareness. In addition, their concentration and sense of calmness and relaxation improves. Here is a simple yoga move you and your child can do together.

Sit facing your partner. * Lift your legs and stretch them out wide on the fl oor. * Rest your feet or ankles against your partner’s feet or ankles—this will be diff erent for everyone depending on your and your partner’s leg length and degree of fl exibility in the hips and groin. * Reach out and clasp your partner’s hands or wrists.

On June 30, 190 participants stretched, danced, and celebrated “selfl ess service” to benefi t Children’s Hospital Oakland and the Africa Yoga Project.

Participants were treated to sessions with some of the Bay Area’s best yoga instructors and enjoyed entertainment and nutritious food in addition to a good stretch. To date, the event has raised $40,000 that will be divided between the two benefi ciaries.

Children’s Neonatology nurse and Yogathon participant Cindy Collinson, MSN, CNS, NNP, said of the event, “It was so wonderful to dedicate a day to care for myself through the practice of yoga while raising funds for Children’s.”

Learn more about Yoga Reaches Out at www.yogareachesout.org.

cess

(top) Yoga Reaches Out’s Laurin Panzano and founder Sarah Andres Gardner with Bay Area co-chairs Malia Hill and Jenn Perell. (r) Yoga in unison.

Bend forward with a straight spine, keeping your legs active and engaged. Your partner will lean back, helping to pull you further into the bend. If you have diffi culty bending forward, you can bend your knees a little bit. You can put a rolled-up blanket under the knees for support, but as you bend, make sure the kneecaps are facing up towards the ceiling. * Come up gently; then switch: You lean back while your partner bends forward. * Work dynamically, allowing each partner to move in and out of the forward bend. See if you can bend a little deeper each time. On the last round, come up slowly and release your hands and feet.


GIVINGBACK

A Gift of Care and ComfortThe Edward W. and Yuri H. Chin Refl ection Room at Children’s Hospital Oakland

Ed and Yuri Chin are active community leaders and philanthropists in the

Bay Area, and longstanding supporters of Children’s Hospital Oakland. In honor of their recent gift of $250,000, Children’s Hospital Oakland has named the Palliative Care Refl ection Room in honor of the Chins. The newly named Edward W. and Yuri H. Chin Refl ection Room is a suite used for end-of-life, postmortem, and bereavement care.

The Chins’ $250,000 will assist the Palliative Care team’s efforts in providing care for children with life-threatening conditions through a focus on enhancing their quality of life and relieving suffering. The Palliative Care team also assists families with healthcare decisions, pain and symptom management, and emotional support and guidance. Located beside the hospital’s chapel, the Suite provides a homelike environment for patients and loved ones to have the benefi t of privacy and dignity during these trying periods, allowing shared moments with a child who has a life-limiting illness, particularly children

who are dying or have just died. In addition to the generous donation to the Palliative Care program, the Chins funded the purchase of a bed and recliner to be used in the suite to allow parents to co-sleep with their child.

The Chins lost two infant sons to muscular dystrophy two decades ago, and they have been steadfast and generous supporters of Children’s Hospital Oakland. Their desire to help other parents and families cope with life-threatening, sometimes fatal, illnesses has inspired this gift. “Having a room like this would help the families,” Mrs. Chin refl ected, sharing her and her husband’s own experience. “Not only are they here [in the hospital], but they have staff to help them through their grieving and dealing with that time in life when they need support.” The

Chins’ recent gifts to Palliative Care will further our ability to provide comfort and support for families during challenging and uncertain times.

We thank Ed and Yuri Chin for their unwavering commitment to serving the needs of children and their families at Children’s Hospital Oakland.

For the diff erent ways you can give to Children’s, go to www.chofoundation.org and click on the “Giving to Children’s” tab at the top of the page.

Mr. and Mrs. Chin were joined by their daughter Amy and hospital staff in cutting the ribbon to the newly named, Edward W. and Yuri H. Chin Refl ection Room at Children’s Hospital Oakland. (l-r) Chin family pediatrician Mary Jones, MD; President & CEO Bertram Lubin, MD; Amy Chin; Yuri Chin; Ed Chin; and Palliative Care Program Director Vivienne Newman, MD.

Mr. and Mrs. Chin were joined by their daughter Amy and hospital

Carson Palmer, Oakland Raiders Quarterback, Visits Children’s Hospital

Just days before heading off to training camp, Oakland Raiders quarterback Carson Palmer

took time out of his busy schedule to visit with kids and families at Children’s Hospital Oakland.

After signing autographs and posing for pictures, he provided a live interview and treated the audience with a question-and-answer period. Palmer’s advice to the kids? “I try to set short-term goals that are attainable in order to accomplish the big-picture goals. It’s the culmination of those short-term goals that gets you big results.”

Thanks, Carson, for sharing your time and inspirational words with us all! Go Raiders!

Qua te bac , s ts

Eight-year-old Marlon Orellana-Enriquez introduced Oakland Raiders Quarterback Carson Palmer at his recent visit to Children’s. Marlon got the crowd cheering as the representative of the tens of thousands of kids treated each year at Children’s Hospital.

Marlon with Raiders' Carson Palmer!


GIVINGBACK

A gift in your will or trust may be the most empowering gift you can make. Your gift, no matter what size, will enable Children’s Hospital Oakland to continue providing lifesaving healthcare to kids long into the future.

We recommend that you work with a qualifi ed attorney to create your will, but we can help. If you have already included Children’s in your will, please let us know so that we can properly thank you.

For more information about gift planning, please callKevin Hughes at 510-428-3860 or Barbara Beery at 510-428-3864.You may also visit our website at www.chofoundation.org/plannedgiving.

Making a Gift to Children’s Hospital in Your Will or Trust

How Southwest Airlines Is Helping Relieve the Burdens of Patient and Family Travel

Southwest Airlines understands the burden of travel expenses when

families facing serious illness must travel for treatment. Through Southwest’s Medical Transportation Grant Program, the airline donates free transportation to help ease the diffi culties for patients and families who receive treatment at Children’s Hospital & Research Center Oakland. By providing complimentary roundtrip tickets, Southwest Airlines has helped connect children and families with the care they need at Children’s Hospital Oakland since 2009.

Because of this program, families can visit Children’s Hospital Oakland for lifesaving treatment without spending long and stressful periods in the car. It’s Southwest’s hope that the time and expenses saved traveling by plane will help reduce the stress of time spent away from work or school, especially during tough economic times.

“Southwest Airlines is proud to provide travel assistance to help patients receive the medical care they need at Children’s Hospital Oakland, and we hope the caring attention of our employees and the travel assistance helps ease a little bit of the burden,” said Debbie Wafford, Southwest Airlines’

Medical Transportation Grant Program Manager. “It’s a privilege to use our airplane seats for good to help patients receive care at Children’s Hospital Oakland, which serves 77,000 children each year.”

“We used the Southwest Airlines vouchers during critical months of my son’s treatment,” says Irma Lira Ramirez of Reno, Nevada. Her son Ricky has leukemia and has been seen at Children’s Hospital Oakland. “After his hospitalization, the family needed to be in Oakland for treatment twice a month. Traveling by car would have been extremely diffi cult for Ricky and our entire family.”

“The vouchers allowed us to spend more time together as a family with less stress and strain,” continues Irma. “We are so grateful to Southwest for providing these fl ights.” In June, Ricky was able to graduate from high school with his classmates.

The gratitude of Children’s Hospital Oakland goes to Southwest Airlines for their invaluable support, and we know it’s a sentiment enthusiastically shared by the many families—like the Ramirezes—that they’ve helped through this program.

Children’s Hospital Oakland patient Ricky Ramirez graduated from high school with his classmates in Reno, Nev., in 2012. Southwest Airlines vouchers allowed him to maintain treatment in Oakland as well as his connections to his classmates and family in Reno.


GIVINGBACK

A word from Betsy Biern, new Senior VP and Chief Development Offi cer

In late June I joined Children’s Hospital & Research Center Oakland as Senior VP and

Chief Development Offi cer. I am excited by all that I have seen and learned so far in my fi rst 90 days, and I look forward to working together with you to continue to build upon Children’s Hospital Oakland’s legacy.

In late July I attended “100 Voices,” an event that brought architects together with city offi cials, neighbors of the hospital, patient families, donors, doctors, nurses, and staff, to begin to envision the future of Children’s Hospital (see sidebar story below). What a remarkable day! The passion for our future, and the community interest in making sure our future is bright, is tremendous.

I have encountered or heard about many patients and their families who have benefi ted from our care, such as the Chin Family, who recently made a gift in support of our Palliative Care program. I’ve met with colleagues in the hospital to learn about what they do as well as new treatments being offered, and I’ve toured labs at our research institute to see the latest in vaccines and in obesity research. In August I attended the symposium that local high school students participate in to showcase the research

they’ve been doing with our scientists over the summer.

I’ve engaged with colleagues who are working on our community-based programs—in local schools, in the juvenile justice system, and with our youngest patients who need our help in developmental pediatrics. I’ve also been getting to know many of our volunteers who put on incredible events to support the hospital, whether it’s Notes & Words or our Score Fore Kids golf outing. And I’ve attended events where Children’s is recognized for the work we do in the community, including a Chamber of Commerce breakfast where we were given the Non-Profi t of the Year Award for our contributions to children in our community.

I’m always eager to hear how we’re doing with our friends and supporters, and how else we could encourage community members to support our patient care and family programs, or the research and education of medical professionals through our residency and fellowship programs.

As we begin celebrating our centennial, I truly hope I have the opportunity to meet and work with you as we celebrate our 100th year of caring for children and their families.

I’m always eager to

hear how we’re doing

with our friends and

supporters. Please

contact me with

any suggestions or

input via email at

[email protected],

or by phone at

510-428-3814.

In July, about 100 parents, children, doctors, staff , and community members participated in the “100

Voices” visioning event hosted by Children’s Hospital and lead architectural fi rm TAYLOR. The event was a way to generate input from many on Children’s plans to build a new hospital. Starting with a light breakfast, attendees settled in for a welcome from Children’s President and CEO Bert Lubin, MD, and Oakland Assistant City Manager Fred Blackwell.

Then the interactive activities began: Attendees were directed to the outdoor courtyard, where 10 tables with large cardboard columns posed questions like “What would help you to feel calm in a stressful situation on the Hospital campus?” and “In what ways can exercise be incorporated into the new design?” Participants gave their input by taping words and pictures on the columns. Among those attended were Oakland Mayor Jean Quan and Alameda County Supervisor Keith Carson.

Afterwards, everyone was invited back into the auditorium for a barbecue lunch. Participants listened

to parent advocate Christie da Silva’s impassioned speech about her family’s experience at Children’s and her gratitude to the staff and doctors who had saved her daughter’s life. Equally touching was a speech by Isabel Bueso, a patient with a rare genetic disorder, whose family had brought her from Guatemala for treatment at Children’s Hospital. She spoke about her extended family of patients and staff , her volunteer activities at the hospital, and the way her experiences had helped shape a positive outlook on life.

Attendees were also invited to create collages about the hospital with artist Denise Clayton-Leonard; the collages will be hung in the new hospital.

The event gathered a wealth of creative input that will help the architects develop a new, modernized Children’s Hospital Oakland.

VISIONING SESSION 2012

Participants fi lled the courtyard to give their personal perspective on what the new hospital could be like; Christie da Silva with daughter, Izzy.

P ti i t fill d th

CHILDREN’S HANDPRINTS SUMMER 2012 • Donate at www.childrenshospitaloakland.org 31

100% of the net profi t from these products and more are donated to support kids’ health and education initiatives in our community, including Children’s Hospital Oakland. Kohl’s Cares continues to fund critical injury prevention education and outreach in our community through Children’s Hospital Oakland.

GIVING THIS HOLIDAY SEASON!

Find online exclusive books and plush at

Kohls.com/Cares

!Skippyjon Jones

makes helping kids FUN

books & plushA New York Times

Best Selling Book Series

Use this coupon to save on your Halloween goodies. Proceeds will benefi t Children’s Hospital Oakland Child Life Program. Child Life off ers an array of services to help hospitalized children and their families while providing valuable clinical services. For more information about Child Life at Children’s Hospital Oakland, go to www.childrenshospitaloakland.org and search “Child Life.”

SUPPORT CHILDREN’S CHILD LIFE PROGRAM AND SAVE AT SPIRIT HALLOWEEN!

SAVE AND GIVE THIS HOLIDAY SEASON!

Radiotón Para nuestros niños 2012 Hagamos un milagro para los niños

Help us make miracles for kids

Radiothonfor Kids 2012

Viernes, Sábado, y Domingo

Escucha/Listen to 93.3 FM La Raza

19-21 de octubreFriday, Saturday, SundayOctober 19-21

Escuchen a nuestros pacientes Latinos y comprométanse a apoyarnos llamando al 800-680-3622. Done ahora al www.chofoundation.org. Si quiere compartir su historia, por favor contacte a Ana Morales al 510-428-3863, o al email [email protected] antes del 14 de octubre.

Hear from our Spanish-speaking patients and pledge your support by calling 800-680-3622 or stop by Children's Outpatient Center atrium on these three days. You can donate now at www.chofoundation.org.

Children’s Hospital & Research Center Oakland747 52nd St. Oakland, CA 94609-1809

Centennial CelebrationSCHEDULE OF EVENTS 2012www.100amazingyears.org

Children’s Hospital Day at The Lawrence Hall of ScienceMon., Nov. 12, 2012 • 10 a.m.–5 p.m. Location: The Lawrence Hall of Science, 1 Centennial Dr., Berkeley

For 100 years, Children’s Hospital Oakland has been developing new ways to keep kids healthy! Join The Lawrence Hall of Science in celebrating this milestone at their Healthy Kids Festival, featuring activities where you can learn about nutrition, measure your heart beat, and get the science behind the work of real doctors and researchers. The fi rst 500 attendees will receive a Children’s Hospital Oakland giveaway.

Fees: General admission fees apply.

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