SUMMER 2007

ALSO INSIDE: Hevanne is the Elliott Never-Give-Up Vichinsky, MD Kid A physician’s path to becoming A little boy with a big heart Hem/Onc medical director was problem beats the odds inspired by ‘60s idealism

When meds can’t control intractable epilepsy, maybe the ketogenic diet can 2 CHILDREN’S HANDPRINTS

table of contents 17 The diet that cures When medications can’t stop seizures, sometimes the ketogenic diet can. At left, Niko, in orange, is now seizure free thanks to the ketogenic diet.

3 DEAR READER Letter from the president

4 THIS AND THAT Little People, Big World comes to Children’s Cable TV show features a Children’s orthopedic physician. James Betts, MD, wins Bronze Bambino “He’s the best trained anything I know in surgery,” said C. Everett Koop, MD, former surgeon general of the United States, about Dr. Betts. The never- Children’s doctors on tour When Children’s specialists talk at area CME lectures, other physicians listen and take notes. give-up kid Physician liaison joins Children’s family Malia Hansen reaches out to help community doctors feel at home at Children’s. 10 Born with a major heart defect and placed for adoption, 7 IN THEIR OWN WORDS: JAMIE NUTILE there was little reason to believe Becoming a butterfly A mom writes about her daughter Alicia’s Hevanne would make it. journey to recovery after severe bites from the family dog. Her daugh- ter’s grace and spirit teach all who meet her the meaning of courage.

14 FEATURE: NEURO-ONCOLOGY Running The bounce-backer Janessa’s adventurous spirit and positive atti- again tude see her through a knock-down, drag-out battle with brain cancer. 21 PHYSICIAN PROFILE: ELLIOTT VICHINSKY 25 Competitive youth From Brooklyn to bedside Elliott Vichinsky, MD, found a way soccer player Andrés Jankowski to combine a love of science and a desire to serve people through survived a car accident that medicine. He’s excelled at both, learning and applying ways to help nearly cost him a leg. Now he’s children with blood diseases. back on the field and playing better than ever. 28 CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION Click here to support Children’s Hospital Donating via the Web has never been easier. Save time and stamps by giving to Children’s Hospital’s foundation at www.chofoundation.org/donate. Discover treasures at The Bambino Search for undiscovered On the cover Charlie Cleberg joins his treasures at a thrift shop run by Branches volunteers that raised more parents in a thumbs- and “toes-up” for the than $100,000 for Children’s Hospital last year. ketogenic diet that helped him become seizure From fear to financial freedom After a difficult childhood, Marge free. Brain bleeds after Charlie’s premature birth Hayden found freedom from agoraphobia through self-sufficiency as a left his arms paralyzed; now he does everything dog groomer. To help other struggling children, she gave a generous with his feet. Photo by Tom Levy. gift to Children’s Hospital when she retired. SUMMER 2007 3

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

Written, designed and produced by: Communications Dept. Children’s Hospital & Research Center Oakland 665 53rd Street, Oakland, CA 94609 Phone: 510-428-3367 Fax: 510-601-3907 Frank Tiedemann Dear Reader: President and Chief Executive Officer Mary L. Dean The first months of the year usually bring rain to northern California Senior Vice President, External Affairs and more patients than usual to Children’s Hospital. This winter was Tina Amey different though, bringing little rain to the region, but a flood of patients Receptionist to Children’s and our busiest January ever. Debbie Dare We’re never happy to see a sick child; but when kids need great Senior Graphic Designer healthcare, the team at Children’s is proud to provide it. Our combination Susan Foxall of state-of-the-art facilities, unwavering focus on pediatrics and Project Manager extraordinary caregivers makes Children’s second to none in northern Tom Levy Senior Writer California. Venita Robinson One such caregiver is Elliott Vichinsky, MD, medical director of Director, Media and Community Relations Children’s Hematology/Oncology team. In this issue we profile his Gary Turchin exemplary work as clinician, researcher, leader and mentor. Writer Other stories in this issue illustrate not only our excellence and range Diana Yee of services, but the wide sweep of geography we serve. Media Relations Specialist Hevanne, who underwent several surgeries to repair a congenital heart defect, is back home in Manteca. Janessa, a two-time cancer Board of Directors survivor, is again adding pictures to her photo album in Benicia. And in Harold Davis, Chair Berkeley, Andrés is back on the soccer field, helping his team score goals Jeffrey Cheung after recovering from two severely broken legs. Arthur D’Harlingue, MD Pursuing excellence at Children’s includes the search for better Arnold Grisham treatments. Our page 17 story looks at the ketogenic diet, an unconven- James Keefe Watson Laetsch, PhD tional treatment for intractable epilepsy that helped Children’s patients Michael LeNoir, MD Niko and Charlie become seizure free. Their parents did their part too, Barbara May working with experienced Children’s caregivers to help the boys recover. Melba Muscarolas To all those in the community supporting Children’s Hospital— Howard Pien especially our generous donors—thank you. Lloyd Takao, MD Frank Tiedemann Gene Upshaw Harold C. Warner, PhD Frank Tiedemann President and Chief Executive Officer Story requests, comments or suggestions for Children’s Children’s Hospital & Research Center Oakland HandPrints may be emailed to [email protected] or sent to 747 52nd Street, Oakland, CA 94609. 4 CHILDREN’S HANDPRINTS this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat

ON LOCATION: [Left] Amy Roloff (center), Zach’s mom, consults with orthopedic nurse clinician Michael Syberg, RN, (left) while the Little People, Big World cameras roll. [Right] Dr. Hoffinger and his TV-star patient meet in the Outpatient Center.

viewers awake and interested. All is being revealed in a series of TV SHOW The Roloffs, many of whom episodes on this season’s Little People, are short of stature, were concerned Big World, on Monday nights at 8 p.m. Little People, that Zach’s legs were affecting the Stay tuned. # 16-year-old’s soccer game. Orthopedic Big World complications are not unusual in comes to people with disproportionate AWARD dwarfism. The exam, which took Children’s place in a hotel room at the Little James Betts, Cable TV show features a People’s Annual Convention, was Children’s orthopedic followed by a journey from the MD, wins physician. Roloffs’ Oregon ranch to Children’s Bronze Hospital & Research Center Oakland, When Scott Hoffinger, MD, first to see Dr. Hoffinger again. A camera Bambino consulted with the Roloff family about crew traveled with them. Longtime Children’s their son Zachary’s bowed legs, the Dr. Hoffinger, chief of Children’s teenager fell asleep in the middle of Orthopedics department, recommend- physician is honored. the exam. Fortunately, the trials and ed straightening Zach’s right leg. He In 1989, James Betts, MD, made tribulations of Zach and his family, performed the surgery in December. national news when he performed sur- stars of TLC TV’s reality show Little In February, Zach’s cast was removed. gery on a patient under the collapsed People, Big World, have kept lots of TV Everything looks great. Cypress Freeway following the Loma

www.childrenshospitaloakland.org SUMMER 2007 5 this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat

LECTURE SERIES Children’s doctors on tour Children’s physicians are reaching out to community physicians with a year-long lecture series.

When Jenny Thomas took her son Lucas for a check-up, the pediatrician noticed a subtle abnormality in the boy’s gluteal fold (buttocks crease). The doctor recalled seeing a picture like it in a class, and knew it needed to RECOGNIZING AN AMAZING DOCTOR: Dr. James Betts was chosen by his peers be examined by a specialist. He to receive the 51st Bronze Bambino award. referred Lucas to Peter Sun, MD, Neurosurgery director at Children’s, where an MRI revealed a tethered spinal cord. Prieta earthquake. It was no surprise to Vermonter, Dr. Betts has maintained a Dr. Sun repaired the cord, and those who know him. Dr. Betts has close connection to his alma mater. In Lucas, 4, is fine. But it’s a good exam- devoted much of his career at 2003 he received the College of ple of why physicians need to stay up- Children’s Hospital & Research Center Medicine’s A. Bradley Soule Award for to-date and informed. Oakland to trauma and trauma loyalty and dedication to the School of That’s why Children’s launched its patients. Medicine, and in 2004, he was named 2007 Physician Lecture Series in For a lifetime of dedicated service to a six-year term on the university’s January. The year-long series of talks, to the well-being of children and an board of trustees. 20 in all, rotate through Modesto, unselfish devotion to Children’s After receiving his medical degree Stockton, Tracy, Pleasanton, Walnut Hospital, Dr. Betts was given the 51st he completed residencies in urology Creek and Fairfield. They are designed Bronze Bambino award at March’s and surgery at Case Western Reserve in to provide community physicians annual Medical Staff Dinner. Ohio, and Children’s Hospital of updates on each specialist’s area of Dr. Betts—a surgeon, urologist Philadelphia, where he met his mentor expertise, and they offer practical guid- and director of Trauma Services at C. Everett Koop, MD, former surgeon ance in diagnoses and treatments. Children’s—joined the hospital staff in general of the United States. Dr. Sun launched the series in 1983. In 1986, he was instrumental in “I had the pleasure of training Jim Modesto. Fourteen physicians spent helping Children’s join the elite group Betts,” Dr. Koop said in a videotaped their lunch hour with him—leaving of level 1 pediatric trauma centers. message played at the awards ceremo- with practical tips on how to recognize Dr. Betts graduated from the ny, “and he’s the best trained anything normal head and spinal cord develop- University of Vermont College of I know in surgery.” # ment. Medicine in 1973. A native 6 CHILDREN’S HANDPRINTS this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat

LECTURING: Children’s Hospital’s first annual CME lecture series launched Jan. 19 in LIAISON: Malia Hansen helps Children’s Modesto with Peter Sun, MD, Neurosurgery division director, delivering a talk titled From Hospital stay in close touch with valued Head to Tail: Evaluation of head size/shape, spinal dysraphism and the tethered spinal cord. community physicians.

were a reflection of the three years Dr. Sun is speaking again July 12 STAFF NEWS Malia spent as a Pfizer pharmaceutical in Walnut Creek. Other Children’s representative in the Modesto area. physicians scheduled to join the tour Physician “These doctors were like my include neurologist Daniel Birnbaum, family when I worked out there,” MD, speaking in Modesto in liaison joins Malia said. November, and neuro-oncologist Now Malia is part of the Joseph Torkildson, MD—(see story on Children’s Children’s family. As physician liaison, page 14)—speaking in Pleasanton in family Malia’s goal is to help Children’s September. Malia Hansen connects with communicate more effectively with its If you’re a physician and would valued community physicians. like to learn more about the lecture NorCal community docs. “I’m learning all I can about our series or attend one of the lectures, Many of the 14 physicians who referring physicians’ practices, so I please call Susan Foxall at 510-428- came to hear Dr. Sun’s Modesto can help connect them with the 3367, or go to www.childrenshospi- lecture were met with a warm smile Children’s specialist their patients need taloakland.org/upcoming_events- and a handshake or hug from Malia in a timely manner,” Malia said. provider.asp. # Hansen. If you are a referring physician and Malia is Children’s Hospital & would like to hear from Malia, she Research Center Oakland’s first-ever can be reached at 510-207-4040 or physician liaison. The warm greetings [email protected]. #

www.childrenshospitaloakland.org SUMMER 2007 7

Severe dog bites put Alicia Nutile in the hospital. Her mother Jamie tells the story of Alicia’s remarkable attitude, and her recovery at Children’s Hospital & Research Center Oakland, with help from clinicians like plastic surgeon John Griffin, MD.

ur family’s chocolate Labrador Children’s Hospital Oakland. She had just IN THEIR Retriever, Bo, attacked my 9-year- had her fourth surgery and had grown very Oold daughter Alicia on Dec. 13, fond of Dr. Griffin. 2005. He had never bitten anyone before, I found this amazing, but was not sur- Own prised; Alicia has had a phenomenal out- WORDS and we all loved him—most of all Alicia. She has always been a complete dog lover. look since the attack. Soon afterwards, I BYJAMIE If you asked anyone who knows her to was explaining the series of surgeries Dr. describe her, the first thing said would be Griffin would perform to help her. Her NUTILE how much Alicia loves dogs. Incredibly, she response: “Oh I get it. It’s like the caterpil- still does. lar to the cocoon to the chrysalis to the Photographs by Tom Levy. “I’m almost glad it happened. If it butterfly! He will make me the butterfly.” hadn’t, I would never have met Dr. * * * Griffin,” said Alicia to my husband Chris The night of the attack, Chris and our and me, six months after her first surgery at oldest daughter Heather, 21, were standing 8 CHILDREN’S HANDPRINTS

[Previous page] Alicia and her parents, Jamie and John, visited Children’s to distribute gifts to patients. [Right] Dr. John Griffin and Alicia during a routine follow-up appointment. [Next page] Alicia brought quilts and books donated by family friends to give to Children’s patients.

next to Alicia in our family room in Vacaville. Then it happened. Seeing the horrific damage to her cheek, Chris picked her up and put her face to his chest, and the three of us drove to the local hospital emergency room. Heather stayed behind to wake up our son Christopher, 15. They met us at the hos- pital. Before seeing the doctor we noticed Alicia also had several head wounds. Emergency room staff immediately start- “I’m almost glad it ed an IV containing pain medication and happened; if it antibiotics. As soon as the emergency room doctor saw her, he said she would hadn’t, I would have to be transported to one of two never have met other hospitals. One was Children’s into surgery, couldn’t speak very easily. Hospital Oakland. Staff were on the Dr. Griffin,” said Alicia. But even so, she whispered to Chris and phone with both, but they weren’t sure me, “Don’t worry about me. Is Bo okay? where Alicia would go. Is he warm?” We immediately knew we wanted her jugular vein were untouched. A nurse gave her a cute little teddy to go to Children’s Oakland. Chris and I Dr. Griffin explained that Alicia bear wearing scrubs to take with her. I grew up in the East Bay, and I had been would need several reconstructive surger- knew Alicia liked that, and I asked her if with an organization that visited ies over the next several months and pos- she wanted to name the bear. She said Children’s to pass out gifts to patients. sibly years. “Faith.” Trying desperately to hold it We were familiar with Children’s impec- Alicia was awake off and on for visits together, we kissed her and told her we cable reputation. from all the family members and friends loved her and would see her soon—that Within the hour we were in an who rushed to Oakland to be with her. Dr. Griffin would take care of her. We ambulance on our way to Oakland. I felt She received cards from her school and had to put our faith in a man we had such relief to be going to Children’s. so many stuffed animals, we could barely just met. Heather and Christopher were there see her in the bed. with other family members when we * * * Dr. Griffin came to examine her arrived. Heather, knowing we would be Alicia’s cheek, including its muscles every day; he was concerned about infec- there awhile, had already packed bags for and nerves, was gone, but there was no tion caused by bacteria dogs carry in Chris and me. bone damage. Her surgery went well. Dr. their mouths. She didn’t have an infec- Soon we met Dr. Griffin for the first Griffin closed the open wound from the tion then, or in the days that followed. time. Right away we felt we liked him. inside of her mouth. We were very fortu- The fear and depth of the pain we Alicia, lying on a gurney ready to go nate that her nose, mouth, eyes and were feeling for our little girl is indescrib-

www.childrenshospitaloakland.org SUMMER 2007 9 able. But the comfort of knowing she children without family or friends by On May 5, 2006, it was time to was where we would choose her to be, their sides. I know she felt like a very remove the expander. I couldn’t believe Children’s Hospital, helped us cope. lucky little girl. She started talking about it. It was incredible. Dr. Griffin had I can’t imagine wishing my child in a wanting to write a children’s book, so actually made a cheek for Alicia! different hospital. The nurses and other kids would know they could be beautiful Alicia had a full and active summer staff members were wonderful. butterflies too—that it’s the inside that and went back to school to start fifth The next day Sister Bernice visited counts, not the outside. grade. us. What a special moment. She helped Soon Dr. Griffin said she could go On Nov. 30 she had another us get through every single day that fol- home. But I feared our return home to expander put in, with more saline injec- lowed. Several other staff members came where this had all begun. tions. It took through January. This time to support us, and we appreciated it. Alicia didn’t want to go because she she wanted to go to school while wearing One day a resident physician came to really liked the hospital. Everyone at the expander. Dr. Griffin agreed, as long see us. She had heard about Alicia and Children’s made her feel comfortable, as she promised to be careful. I knew her wanted to meet us. She looked me in the even during the worst time of her life. friends wouldn’t let her get too active! eye and said she had been bitten in the She was able to find a peace with what Alicia misses Bo very much. That has face when she was young. She thought was happening to her that I don’t feel she actually been the hardest part for her. we might want to see how in time, scars would have found anywhere else. I’m Before Alicia left the hospital, Heather can heal. She looked fantastic. My heart also pretty sure she liked having visitors arranged for Bo to be picked up and swelled, and as I cried, I again felt grate- and a call button for nurses. euthanized. Professionals said he had a ful to be in this special hospital. When we arrived home, it went brain tumor. Alicia continued to have a positive easier then I thought. Heather and Alicia forgives Bo. She says he didn’t attitude. She didn’t sleep through the Christopher had cleaned up the mess mean to hurt her; he was sick. She has night, so I would push her downstairs to from the attack. Heather strung hung a picture of him in her room that see the beautiful Christmas tree and doll- Christmas lights in Alicia’s room and had says “Miss you” on it. She still wants to house in the lobby. all of her new stuffed animals arranged be a veterinarian when she grows up. On her third day at Children’s, on her bed. She had nightmares for a long time, Alicia’s best friend’s mother visited again, Friends had come to clean, and we but during the day, made it her goal to this time bringing huge Christmas stock- could smell cookies baking in the oven. have a good day. A family friend called ings filled with blankets and toys. We We saw the tree lights on and heard the week she came home and said, pushed Alicia in her wheelchair down Christmas carols playing. They made a “Sweetie, did you have a good day?” Alicia hospital hallways while she and a few very difficult moment perfect for us, answered, “Every day is a good day.” close friends gave Christmas gifts to especially for Alicia. Her transition back On Feb. 1, Dr. Griffin removed the other patients. into our home went smoothly. That second expander, inserting tissue under- It really made Alicia sad to see some week, Heather even interviewed for a job neath to raise her cheek, balancing it with and got it. the other side. He also revised the scar. Alicia had many visits with Dr. We are forever grateful to Children’s Griffin, and always liked to see him and Hospital and Dr. Griffin. his nurse, Amber. Her head wounds Alicia may need more surgeries down healed well. the line as she grows and her face In January, Dr. Griffin took skin changes, but when we look at her now, from her body and grafted it to cover the we know she is truly a beautiful butterfly. open wound in her cheek. In February, during her third surgery, Dr. Griffin put a tissue expander into Children’s clinicians see more than 100 dog-bite vic- her cheek. For weeks afterward she tims a year. For more information went in for saline injections to help about Children’s Plastic Surgery the expander work. department, call 510-428-3024. 10 CHILDREN’S HANDPRINTS

Hevanne’s survival was a long shot. His heart lacked a left ventricle and his family placed him for adoption. But Children’s cardiologists and a loving new family intervened, and now he’s…

evanne Brown, 3, plays peek-a- boo with “Poppy” from his Hfifth-floor bed at Children’s Hospital & Research Center Oakland. Poppy, Samuel Sterling, pokes his head here and there, eliciting giggles and screeches of joy. In the room cooing over Hevanne’s fun is “Nanna,” Catherine Sterling, and “Momma,” Henrietta Brown. It’s an all-in-the-family affair. But this isn’t a typical family, and Hevanne isn’t a typical 3-year old. Hevanne was born with hypoplastic left heart syndrome. Even among congeni- tal heart defects, it’s a tough diagnosis. His heart has virtually no left ventricle, the organ’s main pumping chamber. In many parts of the world, he wouldn’t have sur- vived three days. Even in our advanced medical culture, one treatment option, according to Children’s cardiologist Ziad Saba, MD, was “to do nothing.” But Children’s cardiothoracic surgeons Olaf Reinhartz, MD, and John Lamberti,

Written and photographed by Gary Turchin. SUMMER 2007 11

MD, did something. They performed life-saving surgery on Hevanne when he was a week old, beginning the process of rerouting his blood so the weaker right ventricle could do the job of the missing left ventricle. They operated again when he was 3 months old; all told, he had five major heart surgeries by the time he was 9-months, with more to come. (See sidebar on page 13 for a surgery description.) But Hevanne’s challenges weren’t just medical. At 4 months, his birth mom placed him for adoption. Then his first foster family was quickly over- whelmed by the demands of his med- ical condition. With a series of major ALL SMILES: [Previous page] Cardiothoracic surgeon, Olaf Reinhartz, MD, beams like a surgeries ahead, and his life on the line, proud papa while looking over his playful young patient’s shoulders. little Hevanne had no one to hold his [Above] “Poppy” Sam gets a big giggle from Hevanne while visiting him at the hospital. hand. In stepped Sam and Catherine, Poppy and Nanna, a retired Fairfield, Accepting the challenge fered infections, hemorrhages and liver Calif., couple who had fostered many The Sterlings accepted the chal- and kidney problems, and couldn’t eat children. A call from the county foster lenge. They took Hevanne home, but on his own—the temperamentally care program brought them to were back in a week for surgery prep. sweet Hevanne pulled through. Children’s, where they thought they Children’s clinical social worker Leslie “We prayed he would hang in there were only going to give relief to the Cohen, MSW, helped get them a room and get through all the surgeries until struggling new foster family. in Children’s Family House so they he was adoptable,” Catherine said. She “They asked us to take him for a could stay near Hevanne. They took hoped a younger family, with more few days to give the couple a break,” shifts remaining at his side as the energy, would step forward and raise Catherine recalled. Once they arrived, months and the surgeries went by, him. Dr. Saba asked a little more of them. Hevanne clinging precariously to life. “We’d never seen Dr. Saba before, They became fixtures at Children’s, Enter Henrietta but he was observing us through a standing by a child they had only just Enter Henrietta Brown. Ten years door,” Catherine said. “And he comes met, but had grown to love dearly. earlier, she had adopted a special needs in, and he looks at Sam and me, and he Besides the lack of a left ventricle, child, Amontay, now 12. She had a gift says, ‘Will you take this baby and bring Hevanne’s condition was complicated for managing him. A social worker at him back in two weeks for surgery?’ by a leaky heart valve as the right ven- her church sought her out and told her We’d never seen Hevanne before, but tricle’s tricuspid valve isn’t built to han- about Hevanne. It was May 2005. we happen to believe in God, and Sam dle the workload it was now assigned. Henrietta called the Sterlings. “We looked at me, and I looked at Sam and When a couple of surgical valve repairs talked on the phone for hours and said, ‘Which way do we go now?’” weren’t sufficient, Children’s surgeons hours,” Catherine recalled. “We “We were trying to get someone to replaced the valve with a mechanical clicked.” Henrietta came to Children’s take care of him, and they were the St. Jude valve. If you stand close to to meet Hevanne. sweetest people,” Dr. Saba recalled. Hevanne, you can hear it clicking. “I’m a pushover,” Henrietta said. Despite the complications—he suf- “I see those big ol’ eyes looking at me, 12 CHILDREN’S HANDPRINTS

HEVANNE’S GAMES: [Right] When Hevanne comes to visit, everyone wants to get down and play, including Hitu Patel, MD, medical director, Cardiology. [Below] Hevanne happily rests in Sam’s arms, while (l to r) Henrietta and Catherine look on.

and I went, ‘Oh God, that’s him!’” She Meanwhile, there was another orrhaging. I called Henrietta and said: counted on her husband Lee for a surgery that Team Brown/Sterling ‘We gotta go.’ And she said, ‘I’ll be right “reality check.” needed to see Hevanne through. there.’ And two hours later she was “I thought I had an ace in the hole,” Catherine remembered it this way: there. We just changed hands. We left Henrietta said. “I mean I’m weak, but “Sam would hold his hand and sing to and she took over, and here he is today.” my husband is strong. My husband him, and Hevanne would just hang “A miracle baby,” Henrietta said. came a few days later and said, ‘Well, I onto his hand, even though he was guess God wants us to take him.’” sedated. It was like he was saying ‘I can’t Home First, Henrietta and Lee had to get see you, but I know you are there…’” On Aug. 8, 2005, Henrietta took foster care training and get back in the “At the end, we were going to a Hevanne home to Manteca, Calif. county’s foster care system. A couple of reunion, and we wanted to stay till the Other than a couple of brief stints, it months after first meeting Hevanne, surgery was done. I cried and prayed was the first time Hevanne had left they become his legal foster parents. The and cried. We had to leave that night, it Children’s since he was brought in after Sterlings agreed to be “grandparents.” was almost midnight, and he was hem- birth. A year later, the Browns adopted him. The Sterlings, including their daughter and grandkids, have made Hevanne a member of their family, too. “He’s a never-give-up story,” said “He’s a thriving little boy,” Henrietta said. “Very strong willed. He has a heart condition and if something happens, we deal with it. Otherwise he’s an everyday kid, a little daredevil.”

Dr. Reinhartz. “So many times we looked at his numbers and we thought, ‘My God, we’re never going to get this kid out of here,’ but we kept trying. And now, to see him walk in here, like a normal kid…” “He’s a thriving little boy,” Henrietta said. “Very strong willed. I just let him be a kid. He has a heart condition and if something happens, we deal with it. Otherwise he’s an everyday

www.childrenshospitaloakland.org SUMMER 2007 13 How Hevanne’s heart works In a normal heart, the right side pumps oxygen-poor, blue blood into the lungs, where it picks up oxygen. The oxygen-rich, red blood is then returned to the heart’s left side, where the stronger left ventricle pumps it through the body. A two-pump system. With hypoplastic left heart syndrome, the left ventricle is undevel- oped, so doctors must reroute the blood stream so the right ventricle can kid, a little daredevil. ‘I like to run into do all the work. That usually requires three surgeries, done over time. walls, and jump off couches and beds and play with trucks,’ he says. We’re trying to Stage one get him into preschool, get him potty Stage one, called the Norwood operation, was performed when trained. Regular boy things.” Hevanne was a week old. A shunt was inserted to connect his aorta— which sends red blood to the body—to his pulmonary artery—which sends First time back blood to his lungs. “This is his first hospital visit since I This allows the took him home in September 2005,” right ventricle to Henrietta explained, while Poppy and pump blood to Hevanne play their little game of hide- both his body and and-seek. An RSV virus brought him back his lungs. to Children’s for observation. He went home a couple of days later. Stage two Hevanne still has a rough road. He Stage two, needs another major surgery to complete called the the blood stream rerouting process. He Hemifontan has to be bigger and stronger for doctors procedure, done to consider it. Someday, he might need a a few months larger valve, or even a heart transplant. later, connects the “With the type of social support he’s vein (superior vena getting, he’s a candidate for the other cava) carrying blue procedures,” Dr. Reinhartz suggested. blood from the Meanwhile, he has a life and two upper body families that love him, and something no directly to the one thought he’d ever have: a chance. lungs, bypassing the heart and And when things get a little rough for reducing the workload on the Henrietta? right ventricle. “She has no trouble dialing a tele- Illustration Stage three courtesy of phone,” Catherine said. Stage three of the surgery, The Modesto Bee/ “I call the grandparents,” Henrietta Brian Harris. called the Fontan procedure—not yet agreed. performed on Hevanne—diverts blood All in the family. from the lower body to the lungs.

To learn more about Children’s Cardiology and The end result is the weaker right ventricle pumps all the blood to the Cardiothoracic Surgery depart- body, and the blood flows to the lungs “passively,” as part of the natural ment, call 510-428-3380. Or route it must follow. A one-pump heart. visit their Web pages inside www.childrenshospitaloakland.org. 14 CHILDREN’S HANDPRINTS

Treating cancer is hen Janessa came to see Joseph Torkildson, MD, in never pretty. Treating a March of 2005, the situation was already grave. The relapse of brain cancer, W then 12-year-old had just been through six months of treat- even less so. But saving a child’s life is the most ments—including surgery, chemotherapy and radiation—at beautiful thing of all. another hospital. But the germinoma, a cancer that had grown in her brain, grew back. Dr. Torkildson, director of Children’s Written and photographed by Gary Turchin. Neuro-oncology program, understood the implications.

“The treatments she received are chemotherapy and a bone marrow stem normally very effective,” he explained. cell transplant. Janessa’s own stem cells “When germinoma relapses, you have to would have to be harvested first for use go after it full-force.” in the transplant. There were significant Dr. Torkildson outlined the treat- risks of side effects from the treatments; ment plan for Janessa and her mom, a rough road lay ahead. Lorraine Sales. It would have to be But they had a chance. aggressive. It would include high-dose

www.childrenshospitaloakland.org The spirit of adventure number-one fan!” Janessa The last of the human freedoms, it’s said; take pictures—they said, is to choose one’s attitude in any have pictures of everything, given circumstance. Janessa and Lorraine even the “salmon-colored” chose theirs: “Remember all the scary stem cells; and play lots of times when we were stuck in a strange bad poker. place and didn’t know where to go?” “I don’t have a good ble, to restore them after this treatment. Lorraine asked Janessa. They’d traveled poker face,” Janessa confessed. “I get The new cells would re-boot her body’s the world together, flying standby. good hands and I go, ‘Yea!’” immune system and help her heal from “Well, look at this as a strange place: We Her smile is a full house. the treatment. They would give Janessa don’t know where we’re going to go, but When the first harvest didn’t collect her life back. we’re going to get through it.” enough stem cells, another cycle of The chemo is potent because it has They would make the best of it, chemo was needed. More days attached to be. together. “An adventure,” Janessa called it. to IVs and pumps. More days harvest- When her failing kidneys couldn’t “Everything that made it intense ing. More days trying to laugh in the filter one of the chemo drugs—carbo- and miserable,” Lorraine now says, “we face of adversity. platin—out of her blood, the hair folli- would turn that around and make it The worst part for Janessa: Wearing cles in her inner ear were damaged. A memorable and fun. I focused on that, a mask. “It made me look like a duck.” lot of her hearing was lost. focused on that really hard…” The side effects Dr. Torkildson had It was her lowest point. warned about appeared: Her kidneys, Treatment endocrine system and organs were under Watching closely Janessa’s treatment began with stress. Stomach growling. Appetite gone. Doctors, nurses, specialists, care chemotherapy under the supervision of Some hearing was lost. Hair gone a long team associates—everyone in Children’s Dr. Torkildson and the Children’s Blood time ago. 5 South oncology unit—was watching and Marrow Transplant (BMT) team, And the hardest was yet to come. Janessa closely. Most of all Lorraine, her led by Mark Walters, MD. Five days of biggest advocate. “I may not be an chemotherapy to attack the cancer, fol- Full force expert on any of these other children,” lowed by a booster to stimulate produc- This is where the body weakens and she explained, “but I am an expert on tion of stem cells in the blood. When the spirit carries the fight. Janessa.” the cell count rose, a couple of weeks In most chemotherapy treatments, A mother’s prerogative at Children’s after the chemo, Janessa was brought to oncologists limit the potency of the Hospital Oakland. Children’s Day Hospital where her chemotherapy to preserve the bone mar- Lorraine wouldn’t leave the room. “If blood was circulated out of her body, row stem cells, which maintain the she woke up, she needed to know I was her stem cells harvested, and her blood body’s blood and immune system. But there.” returned. It was a full day’s work, four with a relapse case like Janessa’s, Dr. Janessa’s body dove into the storm of days straight. Torkildson had to be sure there was no high-dose chemotherapy. Nonstop sleep. Janessa and Lorraine did what they residual cancer. Not a single cell. He Systems failing. Several times, her kid- do best: have fun; tell jokes; watch prescribed high-dose chemotherapy, five neys almost stopped, and she was readied celebrity chef Rachel Ray—“I’m her to ten times more potent than “normal.” for dialysis. Somehow her levels, like her The knock-out punch. This spirits, bounced back at the last “Well, look at this as a strange place: should not only kill any vestige moment. We don’t know where we’re going to go, of the cancer, but it would A real bounce-backer. but we’re going to get through it,” destroy her bone marrow stem Two, three, four, five days of “full cells as well. That’s why the said Lorraine. They would make the best of force.” BMT team had harvested as “It was killing her,” Lorraine it, together.“An adventure,” many of her stem cells as possi- remembered. Janessa called it. 16 CHILDREN’S HANDPRINTS

Finally, her doctors stopped. It was all she could take. She needed her stem cells restored. She needed to heal. “It was the most scary thing, that day. I was so emotional. Happy Transplant Day? Then I realized what ‘happy Another complication arose. Some transplant day’ meant. You saw this with my own eyes, I would never of the chemotherapy drugs were still in have to live through it to know what it have believed it.’ And she looked at me her system. They could destroy any new meant. It’s deeper…It’s almost like a and said, ‘Do you always attract angels?’” stem cells given to her. She was too birth, a new life starting; these little weak to harvest more. How long could baby stem cells are going to become Home they wait? mature and help her stay alive.” In October, Janessa and Lorraine “It was really touch-and-go,” Dr. On July 1, 2005, the BMT team were able to move into a nearby hotel, Torkildson said. gave her only half her stem cells, in case to be close to Children’s. It was back Scenes in the shower: Lorraine wash- the chemo was still toxic. and forth to the hospital for a while, but ing the chemo off Janessa’s flaking skin, Everything okay. Two days later, by Thanksgiving, 2005, Janessa was trying to clear the drugs out of her sys- they gave her the rest. strong enough to go home. tem. Too weak to stand and see the July 4 And stay there. A few days to recover. But in the fireworks through her hospital window, “Don’t think the worst,” Janessa end, they had to give her the transplant. Janessa watched from her bed. She said, when asked what she’d tell other “I remember seeing these signs at called to others in the unit: “C’mon and kids in her shoes. “You should always the hospital: ‘Happy Transplant Day.’ watch the fireworks!” think you’re going to get better.” What’s happy about it?” Lorraine said. Long, slow climb. Recovery. Janessa bounced back—for good. Future “I want to be a teacher and a A memory writer,” Janessa says about her future. “I “We were playing cards with my want to write about me, but in a fiction nurse,” Janessa said. “My mom, she likes way, so I can exaggerate!” to watch the sunset…This one particu- Lorraine wants to write about their lar day, she was watching the sunset, adventure, too. They have the pictures. and the sun hit perfectly, and an angel appeared in the clouds, with the halo If you’d like to contact Dr. Torkildson or learn and all—it was perfect. My mom said, more about Children’s ‘Oh my God, there was an angel!’ The Neuro-oncology depart- nurse and I both saw it ourselves, and ment, please call 510-428-3308. the nurse said, ‘Oh my God, if I never

JANESSA’S PICTURES: [On page 14] Janessa flashes sign language and a big smile while mom Lorraine looks on. [On page 15] Celebrity chef Rachel Ray signs her book, then offers Janessa a hug. [Above left] Barry Zito, then a star pitcher for the Oakland A’s, visits Janessa in the hospital. [Above center] Janessa with Children’s Val Parker, RN. [Above right] Janessa mugging for her niece Calena and mom. [Left] Janessa with one of the many photo albums chronicling her journey back to good health. SUMMER 2007 17

When meds can’t control intractable epilepsy, maybe the ketogenic diet can.

Written and photographed by Tom Levy.

iko Cortessis used to have offering the treatment. up to 20 seizures a day, At Children’s, the ketogenic diet Nsometimes more than five in begins with a brief hospital stay and a half hour. He was 2 when they continues at home. The diet’s four began. When it wasn’t a head-drop main characteristics are: seizure, leaving him limp as a dishrag, • Extremely high fat content: 85 it might be one more violent, making to 90 percent of food energy comes Niko him roll around the floor. from fat. Now 5, Niko and his older broth- • Calories precisely controlled: er are busily building toys out of plas- Every food item in a meal is measured tic Lincoln Log pieces in their family’s with a gram scale. playroom in Lafayette. • Very low in carbohydrates. Charlie Cleberg used to have a • Supplements and protein must seizure nearly every day—frequently be adequate to maintain growth and between 11 and 11:30 a.m. Five years development. later, Charlie, 8, is glued to his Xbox In 12 years, neurologist Robin video game console in Pinole, playing Shanahan, MD, and Clinical Need for Speed. “He never finishes the Nutrition manager Karen Spalding, race because he’s so busy flying off the MS, RD, CSP, veteran Children’s road getting ‘air,’” said his mom, clinicians, have treated more than 125 Kathy. children with the diet—including For these two boys, and others Niko and Charlie. “(The diet’s) been a with intractable epilepsy, anti-epileptic godsend for us,” said Niko’s mother, medications haven’t helped. But Kirstin. thanks to a remarkable treatment Charlie’s mom, Kathy, is also option called the ketogenic diet, both enthusiastic. “His seizures stopped boys—and many other children—are while he was in the hospital beginning now seizure free. In northern the diet,” she said. “He hasn’t had one California, Children’s Hospital & since; it was dramatic.” Research Center Oakland is one of While the diet doesn’t work for only three Neurology departments every child with epilepsy, about one in Charlie three children treated with the diet 1994, when NBC broadcast a Dateline intractable epilepsy that can’t be experience a 90 percent or greater story about it, and again in 1997, with controlled with medication. Each reduction in seizures. Niko and Charlie the broadcast of First Do No Harm, a patient needs to have tried at least three are among the lucky ones in that third made-for-TV movie that starred Meryl medications without seizure reduction who become seizure free, about 5 to 10 Streep and Fred Ward. before being considered. percent of all those treated. The movie’s fictional neurologist, Once everyone agrees the child is A second third experiences a 50 to like many real ones practicing at the ready—parents, child, treating neurolo- 90 percent reduction in seizures, while time, didn’t consider the ketogenic diet gist and Karen—a date is set to begin. the others experience up to a 50 per- a legitimate treatment and didn’t offer cent reduction in seizures. it as an option. Throughout recorded history it’s But after the Dateline program been known that fasting can reduce or aired, the phone was ringing off the Children’s Hospital’s eliminate seizures. Even the Bible men- hook at Children’s Neurology depart- Neurology tions the phenomenon. Yet today, how ment. Within weeks, Karen and and why the ketogenic diet works Dr. Shanahan were on a plane to department is remains a mystery. Baltimore for training at Johns This seizure treatment option has Hopkins. By February 1995 they one of only four in had its ups and downs in the United had admitted their first patient. northern California States since the early 1900s, when As key members of Children’s keto- physicians at several institutions, genic diet team—which includes other offering the including ketogenic diet pioneer Johns neurologists, a nurse practitioner as a Hopkins University, began studying it. and social workers—Karen and Dr. ketogenic diet As more anti-epileptic medications Shanahan have strict guidelines for treatment option for intractable became available, the diet fell out of choosing patients. They epilepsy. To learn more about the favor. begin with eligibility. In the 1990s, the ketogenic diet was To be considered for the diet at diet, or to make a Neurology catapulted out of obscurity—first in Children’s, patients must have appointment, call 510-428-3590.

www.childrenshospitaloakland.org SUMMER 2007 19

Children’s patients begin their ketogenic eliminate seizures. Whether ketones Maintaining ketosis is tricky. diet treatment with a 24- to 72-hour themselves are therapeutic or are simply Anything from misreading a food label medically supervised inpatient stay. a marker of some other process is not to eating a single piece of candy, to hav- Starting the diet shifts the body’s known. ing a routine childhood illness or drink- principal energy source from carbohy- After their inpatient stays, Charlie ing extra water can throw it off. There drates to fats. Ketones, a byproduct of and Niko, like other patients, returned may also be complications, including fat metabolism, are excreted in urine home to continue the rigidly controlled dehydration, nausea or lethargy. But and signal that the body has shifted into diet. Karen calculates menus designed to nearly all families find the challenge ketosis. help parents keep their children healthy, worth the effort. Maintaining ketosis is apparently the yet burning mostly ketone-producing During their first few days on the key to the diet’s ability to reduce or fats for energy. diet, both boys stopped having seizures. In time, perhaps after two years in ketosis, it’s possible for some treated AT HOME: [Previous page] From inside a large Pottery Barn box, Charlie puts on a children to stay seizure free without the puppet show for his mom, Kathy. diet. Clinicians and parents work this [Below] Niko’s parents, Kirstin and John, sit beneath family photos while Niko plays out case by case. with plastic Lincoln Logs in their Lafayette home’s family room. Their brain chemistry seemingly altered permanently, many seizure-free children may be able to “wean” off the diet, just as Niko and Charlie are now doing. During the weaning process, the calorie ratio between fats, and carbohy- drates and proteins is gradually shifted. It starts in a range from 3:1 to 4:1— meaning for every gram of carb or pro- tein in the diet, three to four grams will come from fats. During weaning, fewer calories will come from fats and more from carbs and proteins, shifting slowly to a more conventional diet. The actual process is slow, precisely calculated and carefully monitored. The boys also illustrate the spectrum of children with seizures. While seizures were Niko’s main serious health con- cern, for most children with intractable epilepsy, including Charlie, brain dys- functions, including developmental delay, are associated with seizures. Charlie has faced a host of serious medical conditions since he was born six weeks prematurely. He spent his first five months on a ventilator in Children’s Hospital’s Neonatal Intensive Care Unit 20 CHILDREN’S HANDPRINTS

and wasn’t expected to live until his first With the help of 2½ days a week at For most families, the hardest part birthday. Brain bleeds led to brain dam- a local intervention program and anoth- of the diet, once they see it working, is age, cerebral palsy and paralysis of his er 2½ days at a preschool, Niko is now staying on it. Building menus that fol- arms. developing at a more normal pace. low prescribed dietary calculations is Because Charlie can’t swallow and When Charlie became seizure free, one of Karen’s areas of expertise. Her required surgery that removed much of his development, also slowed, came goal is controlling calories and carbohy- his intestines, he gets all his nourish- back strong. “Once he stopped having drates, while providing a high-fat diet ment through a tube straight into his seizures, he was able to start thriving containing adequate protein for growth stomach. When he was 3, the seizures even more,” said Kathy. “It seems like and development. “We calculate their started. his brain was able to be more receptive diets down to the gram,” said Karen. But Charlie has been blessed with to learning.” Food allergies and preferences, and wonderful adoptive parents, Kathy and All four parents appreciate not only each child’s oral–motor abilities, must Joe. “Charlie’s done great,” said Kathy. the diet, but Children’s treatment team, also be considered. The diet can be “He’s almost 8 and is fully included in a including Neurology medical director, taken by mouth or by feeding tube, the regular second-grade class at Castro Daniel Birnbaum, MD. “We love Karen way Charlie does. School, a full-inclusion elementary and Dr. Birnbaum, and Charlie loves “The most exciting thing about the school.” them,” said Kathy. “Dr. Birnbaum is the ketogenic diet is you have someone who Seizures, and the medications neu- only doctor at Children’s Hospital who has poorly controlled seizures, that rologists use to try to control them, also actually gets on the floor to play with potentially, on the diet, can be 100-per- put a crimp in children’s ability to learn and examine Charlie. And I think that cent seizure free and off medication,” and develop, especially during crucial says a lot about the man’s character.” said Dr. Shanahan. “The diet can be early years. “A year of his life in devel- Niko’s father agrees. “Dr. Birnbaum stopped after a couple of years, and the opment was just gone from the drugs he was just great,” said John. “He was kids stay seizure free. That’s such an was taking,” said Niko’s mom, Kirstin. always attentive.” exciting prospect.”

Menu planning for the ketogenic diet 21 grams cream, 40% The recipe for maintaining a child on the ketogenic diet combines art and science. Karen Spalding, MS, RD, CSP, Children’s Clinical Nutrition manager, 11 grams calculates each child’s customized dietary prescription of calories, protein, fat, 13 grams raw butter carbohydrates and supplements to control seizures while promoting growth strawberries and development. The art is in creating a variety of palatable, 5 grams age-appropriate menus. 11 grams bacon 61 grams egg lettuce 38 grams Karen understands the visceral connection cream, 30% between parents, children and food. “Since feeding is the most down-to-earth thing you do as a parent, if you can control your child’s horrible disease by modifying their diet and being in charge of it, it really leads to a lot of satisfaction,” she said. “I see that 15 grams broccoli 25 grams over and over again. If it works, they hold on tight.” raw Creative parents come up with food ideas within dietary tomato restrictions, sharing them with each other and with Karen. It’s all 19 grams about letting go of traditional meal combinations. A meal of raw apple 24 grams popcorn, butter and a small portion of bacon may fit the 40 grams cheese with skin prescription, provide needed nutrients and keep a kid cream, 24 grams 25 grams 40% mayonnaise excited about eating. beef frank

www.childrenshospitaloakland.org Elliott Vichinsky, MD From Brooklyn A physician’s path to to bedside becoming Hem/Onc medical director was inspired by ‘60s idealism.

Written and photographed by Tom Levy.

Elliott P. Vichinsky, MD’s voice still carries the sound of Brooklyn, NY, where he was raised in a four-story apartment building belonging to his grandfather. He fondly remembers the 16 apartments in the building, all filled with members of the tight-knit Vichinsky clan. His father was one of five brothers who worked together in the shipping business.

His father was also a poet, sculptor and inven- Center at Children’s Hospital & Research Center tor, and Dr. Vichinsky absorbed his intensity, work Oakland, Dr. Vichinsky, 59, continues doing ethic and passion for creativity. His mother made impressive work as a researcher and physician. sure those in need were helped in their home, teach- He sees the healing arts as a higher calling. ing Dr. Vichinsky never to ignore the suffering of “The gift of being a physician is an enormous others. responsibility,” Dr. Vichinsky told fellow physicians Soon his family of five moved to East Meadow, when honored in 2005 with Children’s Hospital’s where, even in kindergarten, Dr. Vichinsky 49th Bronze Bambino award. “I’ve always seen it as impressed his teachers. “He is alert and eager to an extreme honor, a spiritual experience.” learn,” read a line on his report card from East He backs his words with action. Meadow School. “His work is interesting and origi- Dr. Vichinsky is an expert on genetic blood dis- nal in its content.” orders, primarily thalassemia, sickle cell disease and Today, as medical director of the Hematology/ hemophilia. He has authored and co-authored more Oncology program and Comprehensive Sickle Cell than 300 articles in peer-reviewed journals and is 22 CHILDREN’S HANDPRINTS

editor-in-chief of The Journal of Pediatric Hematology/Oncology. He’s been principal investigator on more than 40 major research projects and has given countless presentations around the world about blood disorders. He diagnoses and treats children with cancer and tumors, helped create the Blood and Marrow Transplant program at Children’s and led the first multi-center studies showing there could be positive outcomes for children with sickle cell anemia. “I was a product of the ‘60s and I really believed in social justice and change, that society needed to do more, to give back,” said Dr. V, as he’s widely known at Children’s, during a recent interview in his small, cluttered, book-lined office. “I really believe it’s the moral responsibility of members of society to help those in need, to never ignore those less fortunate than yourself. Medicine to me was that opportunity to help others. It was a way to make a difference in the world.” He attended State University of New York Downstate’s medical school in Brooklyn and, early on, had an interest in the scientific rigors of internal medicine. But then he met Maria Falter, MD, a pediatric hematologist and professor at his med- ical school. staying on to do a fellowship in Pediatric Hematology/Oncology “Dr. Falter had such a rapport with the children with fatal and later becoming a senior research fellow at the University of diseases,” said Dr. V. “She got down and played with them. She Washington. changed my life.” In 1979, Bertram H. Lubin, MD, now Children’s senior vice He changed career plans immediately, upsetting his advisor president, research, recruited Dr. Vichinsky. Dr. V, in turn, by switching his goal to pediatric hematology. He also accepted brought in James Feusner, MD, a friend with whom he’d trained Dr. Falter’s invitation to help with her research on sickle cell dis- in Seattle. Together they built up Children’s Hematology/ ease. They became close friends. Oncology department; it now has 17 clinicians and scientists. “(Dr. Vichinsky) was so compassionate; he didn’t go after the “Children’s offered me the opportunity to serve a diverse material things a medical career could offer,” said Dr. Falter. “He community that was really a microcosm of the world,” said Dr. was very bright; he had an outstanding personality; and he was V. “Working here enabled me to make a difference in a commu- interested in helping others.” nity, to integrate state-of-the-art research and academic inquiry After Dr. V graduated from medical school, they stayed in into a complicated community that had social and medical touch. When he delivered a research paper in the late ‘70s at a needs.” San Francisco meeting of the American Society of Hematology, As Dr. V took on new roles, he went from mentored to Dr. Falter flew out from New York to be there. mentoring. He recruited Mark Walters, MD, another Seattle It was quite a night after the meet- alum, who now heads up the Blood and Marrow Transplant ing. Because Dr. Vichinsky’s mother was also visiting, he took them both to din- “I’ve learned a lot about life from patients,” ner. After medical school, Dr. Vichinsky said Dr. Vichinsky. “I’ve always found and his wife, Diane, a public interest lawyer, moved to Seattle. He completed patients and parents to be much smarter his residency at Seattle’s Children’s than people give them credit for.” Hospital & Regional Medical Center,

www.childrenshospitaloakland.org SUMMER 2007 23

DR. V: [Top left] Patients: Dr. Vichinsky gave thalassemia patient Christian Dato a hug the day Christian went home after a long hospital stay.

[Above] Mentoring: Dr. Vichinsky talked with Robert Raphael, MD, a Hematology/Oncology fellow at Children’s. “It’s thanks to Dr. V that Children’s has the reputation it has,” said Dr. Raphael. “Everybody knows his name.”

[Left] Colleagues: Dr. Vichinsky shares a laugh with nurse Violetta Borjez, RN, while making rounds on 5 South. 24 CHILDREN’S HANDPRINTS

program. Dr. Walters said Dr. Vichinsky taught him how to be a mentor. “One way to assure that the patients you serve get the care they need is to teach someone else how to do it, or teach people how to do studies that will discover new treatments,” said Dr. Walters. “Elliott’s kind of a model men- tor: he’s done all those things. Over the years he’s trained a number of really productive hematologists.” It’s hard to be a mentor. “You have to selflessly devote your vision to pro- “The gift of being a physician is an enormous responsibility,” said Dr. Vichinsky. “I’ve always seen it as an extreme honor, a spiritual experience.” mote the individual who’s in training,” said Dr. Walters. “Dr. Vichinsky puts people first, he puts the mentee’s agenda first.” to instruct me.” They bounced around learned that people can adapt to serious Dr. Vichinsky adds a twist. her 100,000-acre territory in a beat-up illness and handicaps and still maintain “Mentoring is a two-way street,” he jeep, her laughter in his ear. joy in life,” said Dr. Vichinsky. “The said. “There are a lot of people here But patients have been his best important thing about a Hem/Onc doc- who are a lot smarter than I am. I’ve teachers. “I’ve learned a lot about life tor is to maintain quality of life.” learned a lot from the junior people; it’s from patients,” said Dr. Vichinsky. “I’ve To help maintain his own quality of enabled me to stay enriched, to learn always found patients and parents to be life, Dr. V began running marathons 17 and continue to grow.” much smarter than people give them years ago. He recently ran the Napa Dr. V is proud of the fellows he’s credit for.” Valley Marathon. It was his slowest helped train: “They’re now experts in Dr. Vichinsky tells a story to illus- marathon, but the most fun. their respective fields of trate his point: Ten years ago, when While his two children aren’t run- hematology/oncology,” he said. Many bone marrow transplantation was con- ning marathons, they are following in have joined the staff at Children’s. sidered controversial therapy for many his footsteps, with careers combining Dr. V also praises what he’s learned diseases, many physicians would not healthcare and a passion for service. His from the many non-MD clinicians he’s offer it to families. Dr. V asked his advi- daughter coordinates anti-tobacco poli- worked with over the years. A nurse sory group of patient family members cy for New York City’s public health practitioner named Judy was one in a whether physicians were right to do department. His son, a senior at Tufts long line of nurses and nurse practition- that. University near Boston, is focusing on ers who taught him. In 1973, Dr. V “‘Look, Dr. V. Your job (as medical education for children with special worked a stint with the New England experts) is to give us the information,’” needs. native, who’d been transplanted to a he recalled them saying. “‘We can make His kids and his patients, he said, Papago/Pima Indian reservation in our own decisions. We just need you to have taught him that there are more Arizona. Judy asked Dr. V to give the give us the facts. We’re capable of mak- important things than one’s personal shots because many older Indians she ing our own decisions.’” goals. Quietly he said, “My family is the served didn’t want a woman giving Dr. Vichinsky agreed. “I’ve always most important thing.” them injections. felt that was true. Given the truth and “They can do most of what you (the the facts behind it, families have the physician) can do, and most of the time skills to make the right decisions.” they can do it better,” said Dr. V. “I He said patients have also taught didn’t know how to give shots; she had him about living and dying. “I’ve

www.childrenshospitaloakland.org SUMMER 2007 25

lying across soccer practice fields in the northwest corner of FBerkeley, Andrés Jankowski darts among his teammates as precisely as a hummingbird. He tickles the soccer ball with his feet like a magician doing sleight of hand. The sphere is here, it’s there, and then, with a kick, Andrés makes it take flight. You’d never know that two years before, the 14-year-old at Berkeley’s School of the Madeleine had two bro- ken legs, one with a compound frac- ture. In December 2005, while visiting friends in Concord, Andrés borrowed a Razor scooter. Chased by another boy, and unfamiliar with the roads, Andrés accidentally shot out into traffic on the scooter. A surprised motorist on Clayton Valley Road hit him. By chance, a Concord police officer was there. She stopped traffic, and soon the unconscious Andrés was being airlifted to Children’s Hospital & Research Center Oakland. Andrés’ mother Carmen quickly heard about the accident, first after calls from his friend’s mom, and then with a call from Concord police. “Why A Berkeley teen Children’s?” Carmen asked the officer. plays competitive “That’s where he needs to be,” was the soccer again after reply. Carmen feared the worst. She arrived at Children’s from her recovering from two north Berkeley home just in time to see broken legs. Andrés on his way to the operating room. His face looked puffy. “I knew it was bad,” Carmen said. It was. Written and photographed * * * by Tom Levy. Growing up with two older brothers in Berkeley, Andrés played a lot of sports, mostly basketball. Then, for six months 26 CHILDREN’S HANDPRINTS

Glad to have Andrés back on the team, before he started kindergarten, his fami- ly lived near a soccer field in Florence, Coach Miguel said, Italy. Watching the matches and hearing “If you look at our the cheering crowds, Andrés fell in love with “the beautiful game.” team play, there’s a He played some of his first soccer lot of talent; but matches with Italian boys in the neigh- borhood. He took to the sport like a above all, natural, scoring 18 goals in his first offi- cial match. the number After moving back to the East Bay one quality is and starting at Madeleine, Andrés and several other boys were recruited for a the fight, the first grade soccer team. Volunteer coach Miguel Jara, a former semi-pro and state heart—that’s team player in Mexico, built the team around his son and several other boys, Andrés.” including Andrés. He recognized talent when he saw it. could cost the boy his leg. But for “(Andrés) has been gifted as an athlete,” a kid Andrés’ age, he knew exactly said Miguel, owner of a meat distribu- which technique would work best. tion company. “He basically won the It was dramatically different from games. He did everything. We called that used for an adult’s injury. him ‘Mr. Offense’ and ‘Mr. Defense.’ “We treat a lot of children with attached them to the fixator rod, hold- He’s been my best player all these years. complex long-bone traumatic injuries,” ing the leg bones in place. In a second When he was injured it was hard for me said Dr. Policy. “This is the type of sur- surgery, the small piece of orphan bone to coach.” gery we do frequently. Femur fractures between femur sections was removed. * * * require a certain degree of expertise; it’s The external fixator worked well. It With help from x-rays, James Policy, one of the things that makes a pediatric installed quickly, enabling Dr. Policy MD, a veteran pediatric orthopedic sur- trauma center necessary.” and his team to minimize how long geon at Children’s, quickly sized up Adult treatment of a femur fracture Andrés was in surgery. It was also the Andrés’ situation. is straightforward: Insert a metal rod best way to get his femur out to its nor- Andrés had a broken left tibia, the through the central core of the femur mal length. A second fixator secured the larger of the two lower leg bones, and and attach two screws, one at either broken tibia in his left leg. he had lost three teeth. But the worst end, to prevent twisting. damage was to his right leg. But in growing kids, this procedure * * * Andrés’ right femur, the big bone in won’t work. It can actually cause The surgeries were successful, and his thigh, had broken in two places, irreparable damage to the ball-and-sock- the next day Dr. Policy detected a pulse piercing the skin. The small middle et hip joint. in Andrés’ right leg. After six days in the piece, about an inch long, had flipped For then–12-year-old Andrés, Dr. hospital, Andrés went home, where a around 90 degrees, and the leg’s main Policy used an external fixator. It’s a hospital-style bed had been delivered. artery was injured. steel rod running outside and parallel to His mother slept in the same room with Dr. Policy couldn’t detect a pulse in the leg. He inserted smaller rods into him for months, ready to help. the leg. He knew any delay in treatment the two main femur sections and then “This is the kind of injury when

www.childrenshospitaloakland.org SUMMER 2007 27

GOOOOOAAAALLLL: [Previous page top] Miguel Jara has been Andrés’ coach for eight years.

[Previous page bottom] Physical therapist Robin Bousquet, MPT, worked with Andrés at Children’s sports medicine center to help straighten his right leg.

[Left] Heading the ball takes great skill and concentration; during practice Andrés passed the ball to a teammate in scoring position.

Rehabilitation department. She did * * * physical therapy with Andrés until he The day Andrés came home from could get out of his wheelchair and use physical therapy without his crutches, crutches. Carmen knew he’d be OK. She was so Then Sports Medicine physical excited, she got on the phone and called therapist Robin Bousquet, MPT, took the driver of the car that hit Andrés. over. Because sports med PTs at The driver’s wife answered. Carmen Children’s work very closely with the told her how well Andrés was doing. orthopedic surgeons, she had already “You don’t know what this means to met Andrés, joining Dr. Policy at each me,” said the wife. “My husband has clinic session. “It was definitely a been so concerned, so worried.” When worst-case scenario,” she said. “Andrés the driver finally got on the phone and was the most severely injured kid I’ve heard about Andrés’ recovery, there were you’re happy if you can walk again,” said had so far.” tears at both ends of the phone call. Dr. Policy. “It’s just amazing, the recov- He was also one of the first to go ery he has had. All the credit goes to * * * through rehab at the sports medicine Andrés. He did all the work.” The post-accident Andrés, once the center’s new building on Children’s Of course, some credit must go to fastest kid in school, is now second Hospital’s main campus. “He stood the body’s miraculous healing ability. It fastest. That speed helps at his favorite there with three teeth missing and said, took several months, but Andrés grew position on the soccer field: center mid- ‘I want to play soccer,’” recalled Robin. new bone to fill in the gap, making his field. “You can go anywhere you want,” “He had this drive—in his soul.” right femur whole. said Andrés. “You run a lot more. You His work with Caryn and Robin At first, the new bone was an pass a lot, but I get some goals too. I took about seven months. Andrés had to ungainly lump twice as wide as the orig- don’t like to stand. I’d rather run.” do exercises: with Caryn at Children’s, at inal femur. This was normal. Getting Miguel is glad to have him back on the sports med center with Robin and up, moving around, doing physical ther- the team. “If you look at our team play, also at home. Robin worked hard to apy and working the leg helped Andrés’ there’s a lot of talent, but above all, the help him straighten his right leg, bent body sculpt the new bone into the light- number-one quality is the fight, the from contracture caused by months of weight, honeycombed, cylindrical shape heart—that’s Andrés,” said Miguel. less-than-full use. of a whole and healthy femur. “Now I also have other players with the Sometimes the pushing, pulling and Credit also goes to Andrés’ coach desire to win; they learned that from stretching hurt, but he never gave up. and teammates. Miguel took Andrés, Andrés.” “You set goals they can reach, so they and his wheelchair when necessary, to Andrés is running again—fierce— have success,” said Robin. She praised every soccer practice and match for the and free as a hummingbird. Andrés’ parents too: “They didn’t set entire season. Andrés remembers what any limitations for his goals.” Miguel said: “‘Just because you’re To find out more about Finally the day came they’d all been Orthopedics, call 510-428-3238; injured doesn’t mean you’re not part of waiting for. “When we first saw him run for the Sports Medicine Center for the team.’” Young Athletes, call 510-428-4120. (again), we all cried,” said Robin. “It At Children’s, Andrés also got help Or visit their Web pages inside was a beautiful sight.” from Caryn Lesko, PT, in the Pediatric www.childrenshospitaloakland.org. 28 CHILDREN’S HANDPRINTS Click here to support Children’s Hospital By Ken McKinney Since the dot-com boom of the Go to www.chofoundation.org/donate ‘90s, the Bay Area has been widely and see how easy it can be to support Email alerts: regarded as the hub of high tech- Children’s Hospital. Online donors nology development, particularly receive periodic email alerts Internet development. Research shows Bay Area residents containing the latest Children’s news, new funding opportu- are significantly more likely than other Americans to nities and upcoming community events benefiting regularly use the Internet—as a communications tool, Children’s. and to effectively and efficiently do business. Convenient and fast: It takes only a few minutes and a As more people become comfortable spending and few keystrokes to make a significant difference in the lives sending money via the Internet, Children’s Hospital & of the thousands of children served at Children’s. You don’t Research Center Oakland encourages those wishing to need to wait for a piece of mail or a phone call to give a gift. make a gift to Children’s to enjoy the ease and cost- When you’re inspired to support Children’s, you can give effectiveness of making gifts online; visit www.chofounda- online—anytime, anywhere. tion.org/donate. Making an online gift to Children’s has many benefits, Easy tributes: Giving online also makes it easy to honor both for the donor and the hospital. or memorialize a friend, family member or colleague. The online donation form lets you make a gift to honor or No stamps, no paper: When donors make online gifts, remember a loved one’s life, or a birthday, anniversary or they don’t need to fill out a paper form or mail anything in a other special occasion. You may request that we also notify stamped envelope. This means more of the donor’s gift can the honoree’s family or friends. be used for hospital programs and services. And because E-philanthropy is no longer the wave of the future; online gifts automatically generate printable “thank you” it’s becoming today’s way for more and more donors to letters, Children’s saves money on paper, postage and staff support Children’s. And because online gifts go to the time. Children’s foundation immediately, your donation is avail- able right away to support Children’s most pressing needs. Discover treasures at The Bambino For those who aren’t familiar with it, The make the store a success—including taking Bambino is a full-service thrift store that donations home to be laundered or sells “gently used” and new merchandise to cleaned. The only paid staff member is a loyal clientele. It is owned and operated manager Lani Rumbaoa. by the Chinquapin/Foothill Branch of The Bambino, Lani reminded us, is Children’s Hospital Branches, but it is always interested in good, gently used or supported and cared for by members of newer items, from clothes to household other branches as well. items to furniture to jewelry. They can turn A friendly competition exists to see your junk—’er, treasure—into cash for the which of the branches’ donations and hospital. labors contribute the most each month. Lani invites everyone to come over and “But we’re still nice to each other,” joked do a little rummaging themselves. There’s branch volunteer Sharon Levaggi. new merchandise every day. In November, The Bambino has been at its present The Bambino displays its prime donations location, 5290 College Ave., near the inter- at a boutique sale for holiday shoppers. section of College and Broadway, since 1994. The store donates 100 percent of its Bambino Thrift Shop net profits to Children’s Hospital; last year 5290 College Ave., Oakland, CA 94618 Three loyal Bambino volunteers, Jeanette that amounted to more than $100,000. Phone: 510-658-7473 Kattelmann (seated), Sharon Levaggi (l) The Bambino is a volunteer-based Open Tuesday to Friday, 10 a.m. to 3 p.m.; and Gerry Hillis (r) gather in the tagging room in the back of the store. enterprise, and volunteers do everything to Saturday, noon to 4 p.m.

www.chofoundation.org SUMMER 2007 29

By Ken McKinney Anhel hopes to raise awareness underlying heart condition, her mother rushed her to a Union City communi- about cardiac birth defects and new ty clinic, where the attending physician treatments for them. “It’s really ordered an x-ray and told them, “Something is definitely wrong.” important to share my The physician at the clinic told story and help other kids Gabriela that a visit to the Cardiology department at Children’s Hospital & and families,” said Anhel. Research Center Oakland was Anhel’s best chance to repair her damaged Anhel Amezcua and her cardiologist, Howard Rosenfeld, MD. heart. procedures improved the quality of life At Children’s, cardiologist Howard for heart patients with birth defects hen Gabriela Amezcua gave Rosenfeld, MD, evaluated her; he dis- and other heart diseases? birth to her daughter, covered Anhel had not one, but two Anhel hopes her answer will help WAnhel, all seemed right holes in her heart. He advised immedi- her raise awareness about cardiac birth with the world. Her doctors declared ate surgery to seal them, to avoid long- defects and new treatments for them. Anhel healthy, and mother and father term damage to her heart, kidneys and “It’s really important to share my story couldn’t have been happier. They were liver. Dr. Rosenfeld was Anhel’s pri- and help other kids and families,” said looking forward to taking their new mary cardiologist, and Nilas Young, Anhel. baby girl home. MD, performed the procedure to Telling her story through her class But during a routine check-up at 7 repair her heart. project isn’t the only way Anhel is months, Anhel’s doctor gave her par- For many years following her suc- giving back. She recently helped raise ents some unexpected and devastating cessful heart surgery, Anhel didn’t want money for the hospital’s programs by news. He had detected signs that she to talk about her experience. She was volunteering during the Children's had an atrial septal defect—a hole in always careful to keep her surgery scar Hospital & Research Center her heart. After a heart scan, their fears covered, concerned about what people Foundation’s annual Radiothon for were confirmed. But Anhel’s doctor might ask or say. “I didn’t want anyone Kids, hosted this year by 107.7FM The recommended a wait-and-see to see my scar because I thought it was Bone and sponsored by Foresters. approach, telling her parents it was ugly,” she explained. “I wanted to do something that possible the hole might resolve itself. But now 17 and a senior at counts, instead of just something to For years following the diagnosis, Irvington High School in Fremont, pass a few hours because it is a require- Anhel experienced periodic bouts of Anhel has a new perspective, thanks to ment,” Anhel explained. She also plans tiredness and fatigue, but it wasn’t until a year-long school project she is doing to do volunteer work at the foundation she was 6 that her heart condition for her class. Each student focuses on on other fundraising projects. reached a critical point. She had just one “essential question,” researching If you have a story to tell or would gotten off an amusement park ride and writing a report for a year-end like to contribute to Children’s, please when she was slammed with severe presentation to a panel of teachers. call Ken McKinney at 510-428-3885, chest pain and shortness of breath. Anhel chose a question close to her ext. 2846, or send an email to kmckin- Aware that this sudden onset of symp- surgically-repaired heart: How have [email protected]. To donate online, go toms might be related to Anhel’s advancements in modern cardiology to www.chofoundation.org/donate. 30 CHILDREN’S HANDPRINTS From fear to financial freedom A dog groomer’s journey to self-sufficiency By Lynn Sagramoso

or many years, Marge Hayden suf- faint, just to stop it,” fered from agoraphobia and was Marge says. Soon she Fafraid to leave her own house. was having so many “Sometimes I couldn’t go to my mailbox, attacks that she had or step out on the front lawn,” Marge to stop working. For recalls, shaking her head. She remembers child needs in order to feel loved. I began the next 18 years, the debilitating panic attacks—but they to feel as if I were invisible, or didn’t Marge was so terrified of the panic don’t rule her life now. After years of liv- even exist. It was terribly hard for us kids attacks that she became housebound. ing in fear, Marge was able to create a to grow up like that.” “It impairs your life,” Marge says. safe haven through sheer determination Despite the lack of encouragement, “You live in fear, and your world narrows and her love of animals. Marge excelled at music, especially piano to limit the possibility of another This wise and vivacious woman has and voice. A determined young woman, episode.” Realizing she was not alone, become a confident world traveler. In she graduated from the convent high she reached out to other agoraphobics by planning for her active retirement, she school and went on to San Francisco establishing a telephone support group. has also given to Children’s Hospital a State University, majoring in music. Her husband supported her efforts, generous gift that will ease the lives of During an opera workshop, she too, but after 10 years, their marriage generations of sick children. recalls helping a soft-spoken fellow stu- broke up. Marge’s own childhood was very dent rehearse for a duet, and she remem- One day Marge noticed that her unstable. Her early years were spent in a bers thinking, “Wow, this kid doesn’t poodle needed a trim, which gave her an fatherless home with an alcoholic moth- have what it takes to be in opera.” idea. Because she felt completely com- er. When she was 8, Marge’s mother Smiling, she brings out a picture of the fortable around animals, she realized she dumped her in a convent boarding workshop students, and points out a could manage her panic attacks and her school and never looked back. “The young Johnny Mathis. Marge was offered growing need for money by running her school was very Dickensian—there were a spot in the San Francisco Opera, but, own dog grooming business. She set up about 30 of us children, and the nuns unable to support herself on the seasonal Marge’s Groomerie a half-block from her expected us to live as they did,” Marge salary, she took a job as a receptionist at home, but she had to drive the short dis- says. “We slept in tiny, doorless alcoves Standard Oil instead—and met her tance to avoid an attack. “As a ‘safe’ envi- adjacent to the nuns’ cells, and arose at future husband there. ronment, my car was a security blanket,” 5:30 each morning.” When she was 24, she had her first Marge explains. Silence was enforced most of the panic attack. “My heart began to pound, She learned all the American Kennel time, including during meals. “The nuns I couldn’t breathe, my legs started shak- Club grooming requirements, and she didn’t praise or comfort us the way a ing, my vision got blurry—I wanted to found satisfaction in transforming “a

www.legacyforchildrenscare.org SUMMER 2007 31

scruffy SOS pad” of a dog into a powder important. “It breaks my heart to think What is a Charitable Gift puff. “It was a total joy,” Marge says. of a 3-year-old child battling cancer or Annuity, and how will it “Dogs are so trusting—they helped me other serious illness. If you have good feel secure—and I loved the challenge of health, you’ll have a decent chance at help me give wisely? enhancing each dog’s features.” happiness,” Marge says. “I called up A Charitable Gift Annuity allows you During the three decades that Marge Children’s Hospital Foundation, and they to make a substantial gift to Children’s ran her successful groomerie, her panic explained how an annuity could optimize Hospital & Research Center Oakland and attacks gradually disappeared. “I found my finances. The staff at Children’s receive guaranteed fixed annual payments myself focusing on other things besides foundation made it so clear and easy— (they can never go down) for the rest of the fear,” Marge says. She was able to go I just had to sign my name.” your life. If you, like Marge, use a rental out with friends, and she served on the Because she used the rental property property to fund the gift annuity, you will board of directors of the Alameda to set up the CGA, Marge was able to have the added freedom of enjoying your Humane Society for 10 years. reduce the capital gains taxes she would retirement years unburdened by property management. Throughout her dog-grooming years, have to pay. She also received a signifi- In addition to secure payments, a char- Marge lived frugally, saving for her two cant charitable tax deduction, as well as itable gift annuity provides other benefits, favorite things: opera and travel. When guaranteed annual payments for the rest including: she decided to retire, she consulted a tax of her life. “The CGA afforded me a • A significant charitable income tax attorney about how she might accom- retirement lifestyle I never thought possi- deduction plish this financially. She owned the ble,” Marge says. “I now receive over two • An annuity rate that’s often much building that had housed her groomerie, and a half times the income I got from higher than other fixed investments like and was renting it out. “The rental prop- my tenants.” CDs erty was becoming a money pit. I had Marge now enjoys box seats at the • Partially tax-free payments heard about charitable gift annuities opera, and she is planning her 14th trip • Flexibility to fund your annuity with (CGA) as a possible solution, but didn’t to her favorite travel destination—China. cash, mutual funds, stocks or real estate really know how they worked,” Marge “I am proud that my gift will help make • Capital gains tax savings when you says. children’s lives easier. Life is hard enough use appreciated real estate or stocks to With thoughts of her own childhood sometimes,” Marge says. fund the CGA and history of panic attacks, she felt Thank you, Marge, for your compas- • Income payments that can be made strongly that children’s health was very sionate legacy. And have a wonderful trip! to couples, with payments continuing at the same level to the survivor • Security that your annuity payments are backed by the assets of Children’s Hospital & Research Center Foundation • Satisfaction of assisting generations of children to come, with no probate fees or estate taxes. The Children’s Hospital & Research Center Foundation can work with you or your financial advisor to establish a frame- work for charitable giving that meets your philanthropic and financial goals. For more information on charitable gift annuities, or for other estate planning, call the founda- tion at 510-428-3360, or visit us online at www.legacyforchildrenscare.org.

This is not legal advice. Any prospective donor should seek the advice of a qualified legal, estate [Previous page] Marge with a client at her groomerie; Marge today. and/or tax professional to determine the conse- quences of his or her gift. [Above] San Francisco State University’s opera group, 1955. Marge is third from the left and Johnny Mathis is on the far right. We’re closer than you think. When Children’s Hospital & Research Center Oakland was born 95 years ago, we served babies in our local community. Now we serve kids of all ages, and our service area spans all of northern California, Nevada and beyond. Janessa came from Benicia, Hevanne from Manteca, Dylan from Now we have physicians’ offices in Tracy, Bailey from Turlock, Gracie from Santa Rosa, Adrianna from Fremont, and on and Larkspur, Walnut Creek, Pleasanton on. Kids are brought to Children’s because their parents know that, as an independent and Brentwood to make serving you children’s hospital, we focus all our resources on kids and only kids. more convenient than ever.

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