Back in Action • Two Sides of the Speaking of inside: PAGE 6 Same Coin • Nursing • fall/winter 2004 ONCE HOWARD COULDN'T WALK. PAGE 8 PAGE 18 NOW HE WON'T STAY STILL. THEY'RE 13, TWINS, CHEERLEADERS. FOUR NURSES TELL IT LIKE IT IS. OH, AND BY THE WAY, THEY’VE HAD ABOUT 50 SURGERIES EACH. 2 CHILDREN’S HANDPRINTS

6 table of contents 3 DEAR READER Letter from the President

4 THIS AND THAT Hall of Healthful Learning Children’s hands-on health museum is a field trip destination that leaves a lasting impression on kids. Futurama Some of the most advanced surgical equipment may sound like it belongs in a sci-fi series, but it is used routinely at Children’s.

6 FEATURE Back in Action The near-perpendicular curve of Howard’s spine threatened to claim his mobility. But Children’s specialists turned a child who could barely walk 8 into a typical 9-year-old who won’t stay still. 8 FEATURE Two Sides of the Same Coin At age 13, twins Ariel and Alixandria share a concern about grades, friends, cheerleading routines, hairdos and futures. Born with a genetic condition that limited the growth of their skulls, they also share an extraordinary medical journey.

13 PARTNERSHIPS The Other Way Around: Science Museum Visits Kids Science meets magic when the Exploratorium comes a-calling at Children’s Hospital’s School Program.

14 IN THEIR OWN WORDS Jared’s Journey A grieving mother remembers how living fully meant more than 16 merely staying alive.

16 CHILD LIFE Lounging with the Teens Hanging out is a rite of passage. Our teen lounge is just the spot. Doggy Treats Sometimes, our best volunteers have four legs and furry tails. Their visits are always a hoot.

18 COVER STORY Speaking of Nursing Four nurses from the Hemotology/Oncology department speak about themselves and the variety and complexity of a modern nurse’s life.

22 CHILDREN’S HOSPITAL & RESEARCH CENTER FOUNDATION Triple Your Chances to Help Families Join Children’s President and CEO in 18 supporting a unique program through his two-to-one matching funds gift. Taking a Stand: Domestic Violence is a Kids’ Issue Adam hurts when mom and dad hurt each other. Stand up for families affected by domestic violence. A Lasting Legacy to Advance Latino Healthcare A doctor’s office that comes to you? ¡Ay caramba!

ON THE COVER: Six-year-old Maricella has a great time with her Oncology Clinic nurse Cynthia Freeman, RN. Read the story on page 18. www.childrenshospitaloakland.org FALL/WINTER 2004 3

HandPrints dear reader: A CHILDREN'S HOSPITAL & RESEARCH CENTER AT OAKLAND PUBLICATION Children’s HandPrints is a publication of Children’s Hospital & Research With the winter holidays upon us, we count our Center at Oakland, 747 52nd Street, blessings and ponder our wishes for the future. Oakland, CA 94609; 510-428-3000. Written, designed and produced by: At Children’s Hospital & Research Center at Oakland Communications Dept. at Children’s Hospital & Research we have a lot to be thankful for. We are grateful for Center at Oakland the privilege to change the lives of kids like Ariel and 665 53rd Street Oakland, CA 94609 Alixandria (page 8) and to support families like Phone: 510-428-3367 Jared’s (14) through the most difficult, the saddest Fax: 510-601-3907 times in their lives. We are thankful for the experience, Tony Paap President and Chief Executive Officer dedication and compassion of our nurses (page 18) Mary L. Dean and the skill of our healthcare providers (page 6). Senior Vice President, External Relations And we’re blessed with generous supporters like the Tina Amey Dreisbachs (page 24) who help us make sure that no Receptionist child is ever turned away for lack of ability to pay. Debbie Dare Graphic/Print Designer Susan Foxall Our wishes are just as heartfelt as our thanks. We wish Operations Manager that no child has to come to the hospital, but we Nina Greenwood Marketing Manager know some will. We wish that all who come receive Cyril Manning the medical care they need. We wish that we continue Senior Writer to work with you—healthcare providers, leaders, Bev Mikalonis elected officials, community members, families, Media and Community Relations Director philanthropist, volunteers—to ensure that there is a Vanya Rainova Publications Manager place just for kids, a place for all kids, right here, in Editor the Bay Area. Venita Robinson Media Relations Specialist

Sincerely, Neile Shea Senior Web Designer Gary Turchin Writer

Contributing Writers: Tony Paap Riannon Quezada President and Chief Executive Officer, Photographers: Children’s Hospital & Research Center at Oakland Chip Chipman Alain McLaughlin 4 CHILDREN’S HANDPRINTS this this this this this this this this this t ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat A ANDthat HALL OF HEALTHFUL one’s heart will beat about LEARNING 2 billion times in a lifetime The eyes of a group of fifth graders and a person with straight widen as they watch a three-way-split intestines would have to be screen showing a healthy lung, slowly as tall as a house. inhaling and exhaling in one window. But for these children, Next to it, another lung—a few shades the field trip is more than a darker, somewhat grey— pulses rapidly fun science class outside of to the beat of the short breaths of a per- their oh-so-familiar class- son with emphysema. The third lung is room in St. Patrick’s School being devoured by cancer. in Larkspur. The Hall of “So what is one thing you can do to Health has provided their keep your lungs healthy?” asks the teacher with preparatory OH LOOK! Fifth graders from St. Patrick's School in docent, who is halfway through a pres- Larkspur enjoy the exhibits in the Hall of Health. handouts and follow-up entation on the anatomy of the human worksheets, so after the body in the Hall of Health, Children’s lecture, kids visit stations interactive, hands-on health museum. At Health, children report less desire to in the museum, completing their assign- least half a dozen hands shoot up, and experiment with alcohol, tobacco and ments. “We want to make sure that this the more impatient students speak out illegal drugs; a greater sense of control is a coherent educational experience, of turn: “Don’t smoke!” over their own health; and greater not just a two-hour getaway from It’s obvious that the point sticks with engagement in healthy behaviors such school,” says the museum’s director, this young audience. As do other, less as washing their hands and eating fruits Lucille Day, PhD. serious but equally awe-inspiring facts: and vegetables. Evaluation studies of the Hall of For more information about Health’s field trip pro- the Hall of Health, please visit grams on the human body www.hallofhealth.org. # and drugs/addiction pub- lished in peer-reviewed journals show that after coming to the Hall of

www.childrenshospitaloakland.org FALL/WINTER 2004 5 this this this this this this this this this ANDthat ANDthat ANDthat ANDthat this ANDthat ANDthat ANDthat ANDthat ANDthat ANDthat

FUTURAMA shrink to microscopic size and then ride gizmos. The Stealth uses a high-end Children’s Hospital & Research around in someone’s veins, drive up to computer to combine brain scans (MRI Center at Oakland is famous for provid- the source of some problem and fix it and CT images) and infrared optics, ing care regardless of a family’s ability to from the inside? Well, Children’s doesn’t giving surgeons a 3-D view inside a pay. But did you know that we’re also have a shrinking school bus, but in a patient’s head. A computer screen home to some of the most advanced way, doctors can travel through a vein to shows the position of a surgeon’s tools, life-saving technology in medicine? A fix some heart problems from the inside. with accuracy down to the millimeter. few examples include: For some patients who have a problem The Stealth can even superimpose a 3-D called an atrial septal defect (ASD), or a image of the brain inside the surgeon’s Picture-perfect heart hole in one of the heart’s main chamber microscope. # When most people think about 3-D walls, Children’s experts can insert a technology in the Bay Area, they think catheter (a long, thin, flexible tube) about the animated film studio Pixar. through a vein and into the heart and But if Shrek ever needs a heart exam, he deliver a special clo- just might want to come to Children’s— sure device to the where doctors use 3-D imaging to see a location of the hole. perfect picture of the beating heart. The The device is made technology, 3-D echocardiography, is up of two disks, each ALL CLEAR similar to the ultrasound exam that’s so made of tiny wires Thanks to the Stealth, surgeons familiar to moms-to-be. For years, encased in fabric. now have a clear, however, the technology was too Once in place, 3-D view of a rudimentary to capture the complexities doctors allow the patient’s brain. and inter-relationships of a beating two disks to heart. And while 2-D echocardiography expand—one on has long been available, now Children’s each side of the atrial wall. Within a specialists can use ultrasound waves to few days, the body’s own tissue see the heart in three dimensions, which begins to grow over the permanent allows them to precisely measure the implant, closing the defect forever. chambers of the heart, see the state of a disease or response to a therapy, and Spy camera for the brain even guide catheters and biopsies with Okay, the breakthrough technolo- fantastic accuracy. gy called the “Stealth Station,” which allows Children’s surgeons to see a A heart fix that only seems like magic patient’s brain during surgery, is not Remember the Magic School Bus? actually a spy camera. But it’s more How Ms. Frizzle and her class would amazing than most of James Bond’s 6 CHILDREN’S HANDPRINTS

AT T H E F I N I S H L I N E [left] The Camacho family celebrates the end of a grueling journey to a medical marvel.

A GENTLE PECK [right] from Howard’s sister following the surgery that straightened the boy’s spine.

MRI and more follow-up at Children’s, so the family made the long drive to Oakland, where Children’s orthopaedists and neurol- ogists worked together to identify Howard’s problem and figure out how it might be fixed.

Howard Camacho has been here many times before, and he knows exact- ly where the toys are. The 9-year-old zips curve farther and farther forward, just by Cyril Manning toward the small chest, which sits on the below the base of his neck. By first grade he was experiencing odd symptoms—not floor at the end of a hallway in the The doctors realized that the progres- in his back, but in his legs. He was walking Division of Neurosurgery. He drops down sive curvature of Howard’s spine was not on tip-toes to avoid shooting pain. His onto his hands and knees, sifting through only the cause of the problems with his mother, Norma, would see Howard walk- the assorted treasures, and soon his arms legs—but that it also threatened to claim ing through the snow near his family’s are full to overflowing. He has claimed more and more of his body. His disorder, Tahoe-area home, and his legs looked so anything, it seems, that can move as fast as called kyphosis, is most common among peculiar that she thought he was just joking he does. In an instant he is scrambling low the elderly—it’s what causes some people around. to the ground, screeching a tiny sports car to develop a hunch or hump as they get But Howard wasn’t joking; he was slow- past his neurosurgeon’s office. After a few older. But Howard’s case was genetic, not ly losing control of his legs. Eventually, the races he has discovered a plastic bicycle and age- or posture-related. It was also especial- pain of walking became too much for him learned to yank the zip cord that sends it ly severe, and the near-perpendicular bend to bear. careening across the carpet. Then he assem- in his spine was pinching his nerves. That’s Norma knew something had to be bles a paper glider, one more thing to why it affected his legs, and as his body done. “He would ask me, ‘Why are my legs chase. grew, the nerve damage would surely leave not like my friends?’” she says, speaking Although Howard’s perpetual motion him paralyzed from the neck down. through a Spanish interpreter. “I told him I seems to be the most natural thing in the Peter Sun, MD, Children’s chief of would give him anything to help him walk, world, it’s actually a medical marvel. He Neurosurgery and orthopaedic spine sur- but my legs were not appropriate for his has come for one last visit to Children’s geon James Policy, MD, recognized imme- size.” Hospital & Research Center at Oakland to diately that Howard’s best hope to walk Norma and her husband, Blas, consult- finally be freed of his cervical collar and again would be to relieve the pressure on ed with Robert Haining, MD, medical pronounced fit to run, jump, ride bikes the nerves through multiple, aggressive sur- director of Children’s pediatric rehabilita- and wrestle with his friends. geries that would ultimately straighten his tion services, while he was seeing patients Howard was born with a congenital spine. But such a process would not be spine disorder that was forcing his spine to at a clinic in Reno. Dr. Haining ordered an

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without risks. Operating so close to the case, you really do everything you can to cartilage disks between two of Howard’s nervous system, especially that of a small find a solution.” vertebrae (a procedure known as a corpec- child, requires extraordinary skill, partly Although he was only in the second tomy) completing the first step in reducing because the child’s body is so small and still grade, Howard approached his situation the curvature of Howard’s spine. developing, and partly because the tiniest and the potential surgery with a precocious The next steps would come more slow- slip can damage the delicate bundle of sense of seriousness and optimism. “He ly—over three weeks in the hospital, as threadlike nerves cradled in the spine. Such understood well the reason we were going Howard endured wearing weighted tongs damage could instantly paralyze a patient. to the hospital,” Norma says. “He wanted attached to his skull that literally stretched Few medical centers in the world can to have legs that were strong enough to run his spine into position slowly enough to claim to be a better place for such a with all his friends.” avoid damaging his spinal cord. “After that procedure. Children’s team includes “At first I was like, ‘What’s surgery, surgery, I was extremely sad to see what he experienced pediatric neurosurgeons and Mommy?’” Howard says. “I asked her if looked like,” Norma says. “He was swollen advanced-practice registered nurses, whose they were going to cut me open with a big and there were tears coming out of his eyes, knife.” and there was a breathing tube in his nose, Both his parents and Dr. Sun explained and he couldn’t talk.” everything in terms that he could under- Week after week, Howard recovered stand, and today he can explain that sur- from the trauma of surgery while his spine gery is “like when a bone is broken and inched toward normal alignment. “All that they put you to sleep and fix it.” He even time,” says his mother, “he never changed talked about his condition to his class at the way he is, and he never lost his enthusi- school. “Hey, I’m going to have surgery,” asm. Even then he was a joyful, happy he told his friends. Tracing a line just boy.” above his heart, he reported: “They’re The length of the stay was trying for going to open me here.” the family, but the end was in sight by the “Dr. Sun told me that this was our time Dr. Sun and Dr. Policy operated decision,” says Norma. “I knew we could again, fusing together the vertebrae where lose Howard at any moment.” But she they had removed two disks. Over the took great encouragement from her son. course of the next year, Howard slowly multidisciplinary approach taps the “He wanted to walk with his own legs,” she recovered—first with his head confined to a expertise of orthopaedic specialists and said. “He kept telling me, ‘Mommy, I’m halo-shaped brace that held his spine in cardiothoracic surgeons in state-of-the-art going to be fine.’” perfect alignment, and later graduating to a facilities. But the deciding factor in the Before surgery, Howard met Tom simpler neck brace. During that time, with family’s decision to proceed with Howard’s Collins, a Child Life specialist who helps the spinal pressure off of his nerves, surgery was Dr. Sun himself. kids understand the procedures they are Howard’s legs began to recover their “From the first time we met Dr. Sun, about to undergo based on their develop- strength and energy. he spoke to me the truth,” Norma says. mental level. Collins brought toys and dolls Today, buzzing around the “He explained that Howard’s column could into the preoperative area, using them to Neurosurgery waiting area with two cars, a be extremely damaged, that a misstep dur- play out what the surgery was all about. bike and a paper glider, it is apparent that ing the procedure could explode the nerves. Dr. Sun needed to access the front part Howard’s strength and energy have not But he was also extremely confident. He of Howard’s spine; he worked with pedi- been sapped by his long ordeal. believed that Howard would walk again.” atric heart surgeon John Lamberti, MD, an And what is he going to do now that “In pediatric neurosurgery, there are expert in opening the chest. They delicately his neck brace is finally coming off? That’s some things you just can’t fix,” says Dr. maneuvered past Howard’s critical organs, easy. “I’m going to run and ride my bike,” Sun. “As a surgeon who is also a father, including the major heart artery to the he says. “And I’m going to wrestle with my that’s the hardest part. So when there’s a brain, the windpipe and the esophagus. friends.” # patient like Howard who has a complex Then Drs. Sun and Policy removed the 8 CHILDREN’S HANDPRINTS two sides of

ALAIN MCLAUGHLIN the same coin by Gary Turchin Photography by Alain McLaughlin and Gary Turchin

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Ariel and Alixandria Henley share a lot Autumn. “No, I hardly noticed them,” in the Emergency Department. Daniel with their peers. Like most 13-year-old Autumn replies. Birnbaum, MD, chief of Neurology, was girls, they want to be liked and to fit in, For many girls this is as thorough a finally able to give a name to the twins’ yet they crave being special and try to makeover as they ever get. But for Ariel travails: Crouzon Syndrome. carve out a unique identity. They are con- and Alixandria, this is a relatively minor “My husband said, ‘Okay, give us the cerned about their hair and their cheer- adjustment in their appearances. The bald medicine and we’ll be on our way,’” leader routines; they worry about their spots, finger-wide bands that stretch from Monica says. “We didn’t understand.” grades, their friends, their futures. But ear to ear, are a testament to the girls’ They do now. Crouzon Syndrome is these twins are also warriors, and have the courage, the family’s fortitude and their an early closing of one or more of the battle scars to prove it. surgeons’ remarkable skills. sutures of an infant’s head. As a baby’s brain grows, open sutures allow the skull EYES, NOSE to expand. If one or more of the sutures AND BUMP close early, the skull expands in the direc- Everything tion of the open sutures. The result is not seemed perfectly only an abnormal head shape, but also normal during life-threatening medical problems. Ariel’s and “If we had not intervened early,” Alixandria’s first explains Bryant A. Toth, MD, a cranio- days of life. Then facial plastic surgeon, “they could have had they stopped serious brain complications.” breathing. Although During the initial surgery, performed exams showed noth- within days of diagnosis, the Children’s ing irregular, the team pulled the girls’ skulls up and the breathing problems fronts of their heads out, advancing their persisted over the orbits and foreheads. A few months later, On an afternoon awash with the warm next few months. In the meantime, the Dr. Toth enlarged the backs of the twins’ glow of Indian Summer, Ariel and soft spots on the twins’ heads developed heads. Alexandria are off school early. The girls’ huge, unnatural bumps. The Henleys went home with some mother, Monica Henley, is treating them “When we taught them their body advice the family took to heart. “Dr. Toth to their first major beauty salon parts it was ‘eyes, nose and bump’,” set us straight early on,” Monica recounts. makeovers, which includes hair layering Monica recalls. “That’s how much they “He taught us that if we treat them like and highlights, eyebrow waxing, the whole stood out.” they’re sick, they will act sick. He told us works. They’ve come to an upscale salon Many tests and consultations later, the not to put them in plastic helmets, that we in San Ramon, not far from their Alamo Henleys came to Children’s Hospital & shouldn’t spend the next four years in the home, because the twins’ cheerleader Research Center at Oakland, desperate for house. He was adamant about that. ‘Let friend Jennie recommended it. help. At 10 p.m. they awaited a diagnosis them be,’ he said, ‘they won’t hurt any Ariel and Alixandria sit in front of more than any other kids.’ He was right, giant mirrors, watching strands of we haven’t killed them yet.” their hair get slathered in color and wrapped in tinfoil. The salon’s capes surround them like purple cocoons. From time to time, Monica, who is NEW LOOKS: [far left] Alixandria (l) and waiting in the foyer, checks in on her Ariel (r) show-off their brand new ‘do’s. daughters. She looks at the girls’ [left] A little reading while the color sets. scalps, wondering whether the bald spots are a problem for the stylist, [bottom] Alixandria lets mom in on a beauty secret. 10 CHILDREN’S HANDPRINTS

THEN AND NOW: [bottom] Alixandria (L) and Ariel (R) wait behind a poster that illustrates people laugh and people stare their changing faces; GAME DAY [center] Alixandria celebrates from the top of the but I walk on by like I don’t care, pyramid; [right] The twin Marauders share a mirthful moment. they whisper and laugh in each other’s ear, the look on their face says they’re very sincere, front of me. One girl even said my mom relieve some of the airway problems, but it they don’t know what it’s like or how lucky they are, had changed the votes.” could become a permanent feature. The but one day I will be a star, “She took it so well,” Monica adds family warily scheduled the procedure but if ever someone’s mean to you, think of me, later. “She’s used to people being mean to before it was performed, a Children’s don’t let it get to you too, her. But she wore that crown and no one pulmonologist suggested something just remember how lucky you are, was going to take that away from her. She relatively new at the time—a continuous because in the eyes of god you are a shining star. said to me ‘Mom, why did they have to positive airway pressure (CPAP) machine. — Ariel Tyler Henley ruin it? I’ll never have a chance to do it The machine pumps air constantly, again.’” compensating for apnea. Soon two big oxygen tanks furnished TRANSFORMATIONS the girls’ room. At night, Ariel and Chance may be a misnomer for that Alixandria fastened breathing masks on to SHE WORE THAT CROWN singular opportunity. It took more than their faces. Initially, the twins struggled “1-2-3-4-5-6-7-8-JUMP!” yells the chance: expert skill, advanced technology cheerleader coach and drill sergeant. In the and coordinated efforts between many late afternoon, long shadows fall off the pediatric specialists to make cheerlead- side of Ygnacio Valley High School in ing—and homecoming—possible. “I’m like everyone Concord where the Walnut Creek After the early surgeries, the Henleys Marauders cheerleading squad is practic- went back to their lives, the twins in tow else, I’ve just had a ing. Ariel is on one side of the line-up of with two older sisters and a brother. 15 girls, Alixandria is on the other side. Despite bandages or breathing tanks or few more surgeries Hands clap, hips swivel, arms fly, knees walkers, they were still treated like every- bend, everyone leaps. They’re getting in one else. is all.” – Ariel shape for Saturday’s Diablo Valley Youth But all was not right football game and, beyond that, the cheer- in their world. One of the leader squad competitions. By then they syndrome’s complications hope to have their pyramid routine is irregular growth of the worked out. Alixandria will be the girl on central part of the face, top, hoisted on her teammates shoulders, resulting in awkward then tossed up into the air and caught. appearance and severe Ariel will be one of Alixandria’s catchers. sleep apnea. “Ariel would “This is our best year ever,” Alixandria just stop breathing,” says of her cheer mates. “All the girls are Monica remembers, “I really nice.” can’t tell you how many It wasn’t quite so nice last year when times we had to call an the season ended on a sour note after ambulance and go to the Alixandria was voted homecoming queen hospital.” by the other girls. Monica faced one of “A few of the girls got really angry,” the most difficult deci- Alixandria recalls, “they thought they sions she would have to should have won… They wanted to know make when her twin who voted for me and said I shouldn’t daughters were 3 years have won. They got really mean right in old. A tracheotomy could

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GARY TURCHIN with the apparatuses, but within two “I remember telling Dawn (their long- weeks they settled into a routine that last- time family nurse) that I wanted to look ed for the next three years. like I used to before the surgery,” When Ariel and Alixandria were 5, Dr. Alixandria recalls, “and she said okay but Toth and Martin Chin, DDS, performed I’d have to get shots. I said, ‘Never mind.’ major mid-face surgeries to compensate Dawn knew it wasn’t possible so she said for the stunted growth and relieve the the one thing I hated most—getting sleep apnea. The surgeons broke the bones shots.” and pulled the girls’ faces out. Using bone from the twins’ hips, the physicians rebuilt EVERYONE HURTS WHEN Ariel’s and Alixandria’s cheekbones. Little PINCHED screws stuck out of the girls’ cheeks, Perhaps the constant medical atten- allowing for further adjustment after the tion, the surgeries and the physical dis- surgery. comfort begin to explain why Ariel and Despite Dr. Toth’s candid advice that Alixandria lack memories of their early the Henleys should prepare for the drastic childhood. “That’s okay, I really don’t change of Ariel’s want to remember,” and Alixandria's Ariel says. appearances after But Ariel does the surgery, remember the first day Monica’s gut reac- of school, when she

ALAIN MCLAUGHLIN tion was one of fear made her “best friends and regret: her ever.” “Erin came up the visits happened. They also deny daughters did not to me and asked ‘Do being teased at school. look like her little you want to be my “There were a couple of kids,” mom girls anymore and friend?’ I said ‘okay.’ reminds. she wanted them She said ‘Let’s go and “They weren’t in our grade though,” “put back the way find another best Alixandria responds. they were.” friend.’ Okay.” “Kids do make fun of them,” Monica “We hadn’t yet Ariel and says privately later. At a football game realized what a Alixandria found recently, one of the football players ran major, major acceptance in their down the line high-five-ing all the cheer- improvement they community and leaders. But he skipped Alixandria. “They had made,” Monica schools. Their older don’t like to admit it, but it’s something acknowledges today. siblings had paved they do deal with.” Monica says. “They moved every- the way through thing forward, giving the system, THE STORYTELLER AND them the growth of a acquainting many THE WARRIOR 10-year-old. They just with the family. Monica Today, Ariel and Alixandria are quick had to grow into that look.” visited their schools as well, educating to laugh and easy to engage. Monica says The girls accepted their new looks peers, teachers and staff. that her daughters are shy around reluctantly and fearfully as well. “They “I’d ask everyone to pinch themselves,” strangers, that they’ve learned to be wary didn’t want to see each other because it she recalls, “and then I’d ask if it hurts. of new people. The twins, however, state was like looking at yourself and you don’t Well, it does these girls, too.” differently. look right,” their mother says. “But they The twins barely remember those Alixandria goes by “Zan” in the family, wanted to touch each other a lot.” visits. When asked, they are surprised that 12 CHILDREN’S HANDPRINTS

“I was reading this but from everyone shoot daggers. everyone else, I don’t even remember, else she prefers all quote. It said ‘Normal On the other unless I look in a mirror.” five syllables. hand, she also has a Second-born, she people worry me, great sense of A LOOK IN THE MIRROR agrees that she’s humor. “One time The mirrors at the beauty parlor reveal probably first in everybody’s different.’ we were in this big two bright young faces, studying their new talking. room,” Alixandria looks. Alixandria chose to keep her hair “Everyone’s I think that’s very relates, “and people long, pulled back. Ariel’s cut is shorter, always telling me to were all like looking with a flip at the end. The style suits the shut up,” she says cool.” – Alixandria at us. Ariel just gets bangs that fall down her forehead. They and laughs. When up and says ‘Hello!’ serve a purpose, covering the slight protru- encouraged, she real loud and waves sions of the hardware left in her forehead readily launches into stories, fast-talking at everyone. It was the funniest thing from a surgery last year. Eventually some teenager mode. A storyteller lurks inside. ever.” of the hardware will dissolve to be replaced Both girls like reading, but Alixandria’s Ariel doesn’t openly feel sorry for by bone. Until then, she’ll probably stay taste is particular. “I like stories where herself, either. “A lot of girls, if they have with the bangs. people die,” she admits, “that’s the only to have surgery, they go around moping True to form, both girls aren’t com- part that makes it interesting. I hate corny and groaning about it, but I don’t sit down pletely satisfied with their new ‘do’s. Ariel stories where someone or some dog saves and feel sorry for myself. I can do every- is disappointed that her coloring doesn’t them. It’s pointless.” thing like anyone one else can… I might stand out enough. She wanted it redder. Alixandria also loves singing, dreams of look a little different, I know I do, but I Alixandria is a little unhappy with her being a singer. Coaxed, she offers a verse. don’t really care. It doesn’t bother me.” eyebrows and goes back for a little more “I’m all wobbly,” she warns, but tries “I’m just me,” she says a moment later. waxing. # anyway. “I think you’ve locked your heart “Everyday I go to school, I’m just like away, but maybe I hold the key…” Her voice is deep and resonant, soulful, wise beyond its years. Ariel seems the more aggressive of the two, a little tougher around the edges. She’s learned to take care of herself in a world that’s not always perfectly kind. She admits to being the moodier sister; well, sort of admits to it. “I’m not moody unless people bug me,” she says. “I just like to speak my mind.” “She’s moody,” Alixandria assures. Ariel also doesn’t suffer fools. When people stare at her or her sister, as they do, Ariel can give back as good as she gets. “I stare right back at them,” she says. She balls up her face, scrunching everything toward her nose to demonstrate. Her eyes

ALAIN MCLAUGHLIN For more information about Children’s Craniofacial Center call 510-428-3150.

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LEARNING MADE FUN: [top right] In the hospital schoolroom, children craft disposable glasses to explore the mystery of light and color by viewing the world through lenses made out of colored gels; [left] Marco, a visiting teacher from the Exploratorium, explains the assignment to 7-year-old Fernand.

The Other Way Around: Science Museum Visits Kids by Vanya Rainova There is magic: If you write your name in red on a piece of science more personal and relevant for a young person,” white paper and look at it through red gel, your name will explains lead teacher Marco Jordan, whose favorite project is disappear. building a tornado, a rather elaborate affair, involving a fog And there is science: White paper viewed through red gel maker and fans. Marco, together with Vivian Altmann, looks red because the gel absorbs (or blocks) all the other program director, and Pablo Dela Cruz, project manager, colors reflecting off the white paper, keeping them from works for the Children’s Educational Outreach Program, a reaching your eye. Only the red light can pass through the gel, division of the Exploratorium, San Francisco’s hands-on so the paper looks red. Red light reflected off science museum for youth. The group has part- the red crayon letters mixes with the red nered with Children’s Hospital for 12 years, light reflected from the white paper, making bringing portable, age-appropriate exhibits to it hard to distinguish the red message from kids at the hospital schoolroom once a month. the background paper. Accredited by the Oakland Unified School District, Once a month, science meets magic in the schoolroom at Children’s School Program offers classroom and one-on-one Children’s Hospital & Research Center at Oakland, transform- bedside instruction and activities, helping kids and teens keep ing it into a place of fun and exploration. Incredulous gasps, up with their studies. “For children, one of the toughest things relieved sighs, excited giggles and attentive silence take turns as about being in the hospital is feeling isolated from their peers,” kids build anything from kaleidoscopes to mechanical insects, says teacher Maggie Greenblatt. “That’s why keeping up with membranophones and kites, while learning basic principles of school work becomes important to them. The Exploratorium physics, chemistry and other fields of science. visits add an element of discovery and excitement to that.” # “Viewing phenomena from an artist’s perspective, or simply incorporating an artistic element into our projects, makes 14 CHILDREN’S HANDPRINTS

JARED’S JOURNEY

Sometimes we can’t even say it aloud: death is part of the life cycle; grief is integral to the human experience. For many people, including healthcare professionals, accepting these simplest truths may prove the hardest. But while the science of medicine focuses on diagnoses, treatments and cures, at Children’s we believe that at

the heart of medicine one must also find strength,

support, compassion and humility. In this issue of

HandPrints, we’ve published an essay by a mother

who writes about the loss of her son to cancer.

With a moving honesty, she

describes the last days of Jared’s

life, the way Children’s staff

helped ensure that Jared’s staying

alive did not become more impor-

tant than living itself, and why she has joined the End-of-Life Care Committee at Children’s Hospital & Research Center at Oakland. You can also read about the com- mittee’s work and the opening of George Mark Children’s House, a pediatric end-of-life care facility.

Illustration by Neile C. Shea www.childrenshospitaloakland.org FALL/WINTER 2004 15

Someone once told Hematology/Oncology staff made sure that IN THEIR me I would feel better Jared could trick or treat one last time. By Supporting Compassionate when I "got over" my this time he was swollen and pale and could Own End-of Life Care WORDS grief. As if the loss of my not walk. As my husband pushed Jared in his BY RIANNON child was comparable to stroller, I held back the sadness and put on George Mark Children’s House, a freestanding QUEZADA recovering from a cold. my festive face—one of the many faces I had pediatric respite and end-of-life care home, has You don’t get over grief, learned to wear in those fifteen months. opened its doors. you learn to live with, work through and Some of the staff wore their happy faces, too. The 15,000-square foot facility resembles a transform your grief. Some of those faces melted as we pushed large family home with eight children’s bedrooms When Jared was born, my husband cried. Jared to his next stop. Until that day, I hadn’t that have the capacity to sleep a family member. When I nursed him I felt immeasurable fully realized how much they truly cared for The five-acre campus also houses two family pride. From the moment they laid him on him. suites, communal and private gardens, and my chest, I felt as if I had known him for The night before Jared grew his wings I companion pet accommodations, as well as years. The chubby little blue-eyed boy was spent some time alone with him. He had computer, music, art, speech, and occupational not a stranger to me. He was born to be my been asleep for two days and I ached to hold and physical therapy activity areas. Pediatric son, but in the four and a half years of his him. I practiced my own goodbye ritual with physicians, nurses, social workers, spiritual care life, he also became my friend. We shared a him and told him that I loved him, but it was counselors, home health aides and bereavement love to talk and a need to be out of the house okay to go home. I told him I would be okay. specialists staff the home. and active. At 7:45 a.m. on Oct. 25, 2003, my baby “Choices have been limited for families when When your child is diagnosed with can- boy left me behind to continue his journey. a child’s life is ending. They either die in an acute cer, life begins to revolve around a cure. Being This part of his adventure had to be done care setting or at home, leaving family members alive can easily become more important than without us... without me. overwhelmed and devastated without support,” living. Jared did not allow that to happen. I don’t remember Jared’s funeral, his says Barbara Beach, MD, medical director of Children’s Hospital staff did not allow that to memorial or much else from the first six George Mark and pediatric oncologist at happen. months after his death. Many holidays came Children’s. “George Mark provides an alternative By the time we came to Children’s and went while I stayed numb. I never felt to help children die without pain, in comfort and Hospital, I knew that Jared had little or no the depths of grief all that time. When grief with dignity.” chance to survive his rare, aggressive illness. came, it came hard. I spent many months Children’s Hospital is helping build the referral Yet in the last 15 months of Jared’s life, sleeping most of the day and faking the time program from hospital care to hospice care. Children’s staff and I were able to focus not I was awake. A friend told me to fake my * * * only on his treatment, but also on his child- good feelings. She said eventually, before I End-of-life care is one of the most challenging hood. Throughout chemo, splenectomy, a realized it, they would become real. I am assignments for any pediatric healthcare provider. bone marrow transplant and many, many slowly becoming real again. The experience raises many cultural, religious and other procedures, Jared remained a constant Many people want to help me honor personal questions. What’s the right thing to say? source of laughter and joy. Sometimes he Jared’s life. Not many want to discuss his How do we optimize comfort and dignity? What drove me crazy with all the things he wanted death. I have joined the End-of-Life Care choices must parents make? to do, see, touch, taste and hear. Somehow, Committee at Children’s; it is my way of To explore the sometimes confusing and Jared knew he needed to experience it all, but honoring Jared’s next step, his hospice time, always heart-wrenching process of caring for a only had a short time to do it. I did my best his death. I hope my experience can make it dying child, Children’s End-of-Life Care to make sure that he could. easier for other families. Committee is working to establish the best possi- During Jared’s last two weeks here on I know that Jared is home. I know that ble procedures and protocols for palliative care. earth I watched him breathe many times. I someday I will see him again. Until then, I “Our institution has always embraced family- kissed him often and told him I loved him have had to find ways to “keep him here,” so centered palliative care,” says Marsha Luster, enough to begin annoying him. We took to speak. Jared’s life was not taken from him. MSW, chair of the committee, “but there’s always daily walks, wandering through Walgreen’s, It was not cut short. Jared lived his life com- more we can do. This is giving us an opportunity picking out Halloween costumes and decora- plete. Now, I must continue to follow the to formalize procedures and make them available tions for his hospital room. Jared chose a path that has been laid out for me. I believe, so that everyone, in every department, can access robin costume. that part of my journey was to have known and learn from them.” # Social worker Heather Fox and the and fallen in love with my amazing Jared. # 16 CHILDREN’S HANDPRINTS CHIP CHIPMAN

by Cyril Manning It’s 7 o’clock on a Wednesday some they’re an escape from doctors evening, and the Teen Lounge is filling and nurses or a place to socialize, for up with patients. Tonight’s theme: fash- others it’s just good to be with older ion design. kids in a place that often focuses on the Cecile is absorbed in her work on a needs of young children. Tonight, while complicated stencil, which is a long, Cecile and a couple of other teen girls wispy flower that she’s placed down the work on t-shirts, Brian—almost an center of a plain white t-shirt. She adult—doodles absent-mindedly with paints each petal, each leaf and every paints while gabbing on his cell phone. segment of the tall stem with slow, Across the room a patient and his visit- thick brushstrokes. Purple is the ing buddy laugh their way through dominant color, with hints of green. A board games with a pair of hospital seventh grader who has been in and out volunteers. In the corner, another pair of Children’s inpatient units more times of boys are consumed by their heated than she would care to count, Cecile PlayStation match-up. isn’t feeling so well tonight. But being “It can be a tall order to ask kids here gives her something to focus on who’ve never met each other, who may outside of her medical condition, her not feel well or look the way they do hospital bed and the many “pokey outside the hospital, to get together things” that nurses seem always to be and hang out,” says Suzanne Berkes, sticking into her veins. the Child Life specialist who runs the ART AT NIGHT [top left] Volunteer Brenda The evening gatherings provide teen program. “But the opportunity to Waller steadies the stencil while Adriana paints; something different for each teen—for interact with other kids and just be a [top right] Brian doodles with paint; [bottom] Cecile works on her t-shirt design.

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teenager or preteen is so important. Sometimes they have great conversations about what it’s like to be sick. Other times everyone just plays board games and video games or paints t-shirts. Either way, it helps to have some time for normal, everyday things even though the hospital is not a normal, everyday place.” “You meet all sorts of people here,” says Cecile. “It’s kind of like a little civilization.” By the end of the night, Cecile has added a colony of colorful butterflies to TURCHIN GARY her design. She’s tired of being in the hospital. But her bright-colored t-shirt is a reminder, she says, “that good things GENTLEMAN NICK Whether pulled, can come out of something that seems pushed, snuggled or petted, Nick is never bad.” rough and always ready.

Foundation, an organization that provides the healing comfort of companion animals to people of all ages who are hospitalized or confined. by Gary Turchin Dogs and their owners come to Nick, 11, is one of the hospital’s Children’s three times a month, visiting most popular volunteers. Kids wait not only the playroom but also children doll no matter what kids do—pull his anxiously in the fifth floor playroom for who can’t leave their rooms but can use a tail, drag him in a wheelbarrow or his visits, hoping to get a chance to play snuggle in bed. The kids respond with snuggle him in their laps. with him. When Nick finally shows up, bright smiles and lots of friendly petting. Of course Nick and other visiting his feet slide awkwardly along the When they are shy or intimidated, as pets have been carefully trained and smooth floor, making him seem a silly a few are, Elizabeth uses the tail-first tested before they’re ever brought near guy. strategy. kids. “These dogs are beyond reproach,” Nick’s not all that silly. He’s calm, “Sometimes kids feel safer approach- Elizabeth assures. “They are re-tested well behaved and exceedingly gentle. He ing from the back,” Elizabeth says. She annually.” But elsewhere, Nick does have also happens to be a dog, a border terrier demonstrates by turning Nick around his vices. “At home, he barks and chases who comes regularly with his best friend and wagging his tail at 1-year-old squirrels,” Elizabeth says. A guy needs his and guardian, Elizabeth Soares, to cheer- Marcus. Marcus stays safely away, only outlets. # up kids at the hospital. Elizabeth and once darting in for a touch. Nick doesn’t Nick are from the Friendship seem to mind. He’s as compliant as a rag 18 CHILDREN’S HANDPRINTS Speaking by Vanya Rainova Photography by of Alain McLaughlin

Sometimes stories take on lives of their own. NursingOn these pages of HandPrints, we planned to feature a single nurse, much like Marianne Ohlson, RN we have done with physicians and researchers in the profile Hematology/Oncology inpatient unit, 5 South series of previous issues. But there was a recurring theme 29 years at Children’s during Jim Riddel’s interview: the variety within the world Children on Marianne’s unit have a life-threaten- of nursing far exceeds the public image of the profession. ing illness; their families face probably the most Measuring one’s blood pressure, changing dressings and important, most strenuous battle there is. Some kids have been diagnosed recently, others have administering medication treatment do not even begin to relapsed into their diseases, most are undergoing speak about what nurses do. That’s why we decided to inter- chemotherapy and radiation. The majority will tri- view four nurses within the same division—Hematology/ umph over illness, but a few will not. Oncology—who worked in different areas and had varying Marianne’s voice is soothing, her demeanor responsibilities. We learned that from tricking defiant kids leveled and reassuring. Sometimes, at the end of a storm, she may go into an empty room and let the into taking their medications to breakthrough research, from pressure out, but during emergencies, chaos and phone counseling and diagnostic screening to testifying in plain business, she is known for remaining calm. courtrooms, nurses do it all. But we also noticed a common theme—it was easier to get a sense of the experience of being How did you end up working here? a nurse than of the profession’s logistics. The thread of compas- I started working at Children’s when I was a sion and human touch weaved through all these nurses’ stories. senior in high school. I had a part-time internship as a registration clerk. The hospital paid half of my salary and the school paid the other half. At MARIANNE WITH BRIAN the end of the summer between my junior and senior years I was hired by the hospital as a clerk. I met my husband here; he worked as an ambu- lance attendant back in those days. So Children’s Hospital is more than half of my life; I’ve been here almost 30 years and I’m not 50 yet. I eventually got my nursing degree and began working on C1, a floor where children were placed by ages, not diagnosis. I ended up getting assigned to Hem/Onc patients often. I enjoyed the continuity of care. They have longer stays and you get to know the family and child, as opposed to a child with a urinary tract infection, whom you barely get to know before the family’s gone. Here [at 5 South] you get to know and work with the whole family—grandparents, aunts, even neighbors. Sometimes you’re pulled in and you become part of the family in a way. FALL/WINTER 2004 19

MARIANNE WITH DAKARAI Given the relationships you develop, English. With the help how do you deal with death? of medical interpreters, The first two years were very hard. they too learn. In a few There were support groups at the hospi- weeks they are pros. tal that helped us learn how to take care What keeps nursing of ourselves. The first few years I went from getting to every funeral and it was really diffi- boring? cult. Now I know not to do that. I only It’s never boring. I go if I have been particularly involved in learn something every the care of a child. day. There are always But what helps me most is that I new challenges, new know how much I help families. Even medications, new ways when I am involved in end-of-life care, I of doing things. Medicine has gotten so What have you learned from your am still helping them, and it is so much better. There are so many more patients? rewarding. And then, the children who medications and resources to keep a I’ve learned how important it is to do survive—who are most—may come child comfortable. For example, we used be honest and put everything on the back in a year to see you, after they are to do all our procedures in the treatment table. I assure families that we won’t ever done with their treatment and their hair room with just a little bit of pain medi- not tell them what we’re doing. They has grown back, and they come running cine. We would do spinal taps and bone appreciate that. down the hallway to greet you… That marrows right here. Now they’re all is such a rush, and it totally keeps me done in the OR and that’s much better. What is the typical day of a floor here. nurse? Why do you think there aren’t Is there a visit you will never forget? enough people choosing to be a You come in and get your assign- I will never forget this young man nurse? ments. Usually, you take care of three to four patients. You need to prioritize your who was diagnosed with leukemia when Because the media makes it look tasks for the shift. We give blood prod- he was about 6, finished his treatment, horrible. They make it look as if you get ucts, antibiotics and various IV medica- and came back as a teenager just to say horrible assignments, and as if nursing is tions, along with oral meds. When they hi. Of course I didn’t recognize him, but a very hard field, which it is, but it is have procedures, we make sure they get I recognized the mom. He had grown to also, again, such a wonderful field. I there and sometimes go with them. be this big, buff, handsome young man. think the word isn’t out about how We’re here for eight hours. Then the I made him show me his driver’s license. wonderful it is. next shift comes in. It’s like passing the What do nurses do for families? How is being a pediatric nurse differ- When a child is diagnosed with can- baton. You don’t go home and worry ent? about not having done this or that, cer, the family is going through probably If you chose pediatrics and it is in the biggest crisis in their life. We help because you know your colleagues will. your heart—it is not for everybody— This is a 24-hour cycle. them get through that. Doctors give then you stay in it and you love it. With How does your work affect the rest families tons of information, explain some children you wouldn’t know they of your life? what they’re going to do, answer all the are getting chemotherapy. They are so I go home and count my blessings family’s questions as much as they can, resilient. They are running up and every day. I am more patient with my and then they go on to the next thing. down, playing basketball. To adults you own children. When they’re arguing But we’re there 24/7 to explain and may say “We’re giving you chemo,” and about cleaning their bedroom or staying teach families. they’re sick before you even get the up late or doing their homework, I say, Families learn to administer shots, chemo in the room. change dressings, draw blood, flush “Okay, at least I have my children to broviac catheters. And some of them are argue with about such things…” multicultural families who may speak no _____ CYNTHIA WITH MARICELLA

Cynthia Freeman, RN would remember that I needed to con- becomes a wild card. Sometimes you Hematology/Oncology Clinic vey something, which I didn’t have the think a patient is coming in for one 18 years at Children’s time to do in the office. And sometimes, thing and you learn there is a different Cynthia’s smile is quick, her laughter you make a simple phone call, and you issue. You have to make decisions on the —boisterous. After five years on 5 South, learn a kid is having a fever, and it is no spot. But it is really fun because you get she moved to the clinic, where patients longer a simple call. to do patient interaction. continue to be followed after they are But in clinic I see a broader spec- How did you decide to become a discharged from the hospital. trum of patients. I can talk to a patient nurse? Cynthia wins over her kids with her who is now 30 years old and married respect for and trust in them. She knows In high school I knew I wanted to and comes to see us once a year. I can old souls do live in young bodies. “If do something medical. I volunteered at also be the first one to know when nothing else, I’ve learned that children a hospital. I took pre-med classes while I are instinctively so much more aware someone has relapsed because I’ve gotten was in nursing school. The plan was to than what we give them credit for,” she their labs before their regular clinic work for a while to help finance a med- says. “Sometimes parents ask that we appointment. ical education. But when I became a don’t mention the word cancer, but I know I always try to tell my friends who nurse, I said “This is it! I love this!” the child knows.” are working on the floor about the kids What are some of the challenges I see in clinic after they have left the Compare working on the floor to nurses face? floor and who are doing well, just to working at clinic. Sometimes it just seems there aren’t remind them that there are many, many At the beginning it felt like jumping enough of us to go around. Sometimes kids out there whom we have helped. out of the frying pan and into the fire. you work so hard and you may still feel On the floor, little surprises do happen Is there a typical clinic day? that you have not done a good enough during the shift, but at the end of the Yes and no. On clinic days I come job because you’re spread too thin. shift you’re through, you’re done, and early to prepare. We’ve already seen Insurance companies are another you know someone else will be there to who’s coming and gone through the hassle. We have authorization specialists pick up from where you left off. Here, if charts. Whatever lab results we need and and usually don’t have to get involved. something doesn’t get done you think we don’t have, we get. We make sure we But in complicated cases we do talk to and worry about it; you take it home have the chemotherapy, the labs and the case manager. There are weeks when with you. Sometimes I would place a scans we need. you feel you’re fighting an uphill battle call to a family after work because I Then patients start coming in; it trying to get anything authorized, and it

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is discouraging that you have to jump Unfortunately, sometimes the public’s plan and the nurses carry it out because through hoops to provide care for a perception is that we’re here to serve we know how to carry it out. We pro- child. physicians. I know that when Florence vide patient care in different ways but So what keeps you going? Nightingale was first developing the pro- we have a common goal. Parents may call simply because fession, she said something like that she their child has a cold. They might be was there to assist physicians in their worried because the first time the cancer presented itself like a cold. How can you not be worried? It’s happened, and once it happens, you think it can happen again. When you get calls like that and JAMES you can calm parents down, and they say “Oh, I feel so much better now that I talked to you,” you feel fulfilled. Despite aggravations, it’s that human touch that keeps you going. How do people react when you tell them you work with oncology patients? People always say “Oncology? I don’t know how you do that! I couldn’t.” And I tell them, “You know, you have to give a lot but you also do get a lot back.” _____ James Riddel, PNP Hematology/Oncology Clinic 12 years at Children’s Speaking about his profession, Jim is passionate and candid. His nursing career has taken him through many roles in multiple departments, and he is quick to zero in on some of the more sensitive issues in the nursing profession, including work, but I don’t think she meant to say, Why are male nurses fewer than gender stereotypes and stature within the ever, that we would be perceived as the female nurses? healthcare system. handmaids to the physician. In assisting Before Florence Nightingale institut- What don’t people know about physicians, we’re here to take care of the ed her reform, many men were nurses. nursing? patient. Walt Whitman was a nurse in the Civil What a lot of people don’t realize So you’re saying that there is a hier- War. It is also true that homeless, drunk- about nursing is that patients are admit- archy in the public perception? ard, prostituted women took care of patients in the hospital before Florence ted to the hospital because they require a The common theme is that we Nightingale made it a respectable profes- nurse’s care. If they didn’t require a weren’t smart enough to be doctors. But sion for women. When that occurred, a nurse’s care, they would be seen by the it is not about being smart enough to be lot of women went into nursing; you doctor in an outpatient setting. But peo- a doctor, it is about what type of rela- have to remember that they weren’t ple don’t always focus on that. I person- tionship you want to have with your allowed into medicine at that time. I ally feel that we owe a lot to the staff patient and what type of care you want think there is still that ridiculous ‘stigma’ nurses. to provide. My vision is that nurses and that nursing is a woman’s job. It took me a long time to realize that physicians are totally collaborative in nursing is a profession of its own. care. The physician writes a treatment [CONTINUED ON PAGE 26] 22 CHILDREN’S HANDPRINTS

Triple your chances to help families

Lucas Jacksondaley suf- fered severe heart problems and a brain hemorrhage within hours of his birth, and required 17 surgeries as a baby and toddler. Emerging from his medically fragile condition, his development would be far from normal. His parents, Jacquelyn and Lee, struggled to help him grow and thrive. They turned to the Parent-Infant Program (PIP) at Children’s Hospital MAKING THINGS BETTER Coping & Research Center at with a child’s developmental difficulties can Oakland. Through ongoing be trying for the whole family. At the For Tony Paap, Children’s president and CEO, the Parent-Infant Program specialists help hun- home and clinic visits, PIP pressing need to reach out to families like the dreds of kids and their families through staff provided intense, one- therapy, counseling and support. Jacksondaleys is more than a hospital priority—it’s a on-one therapy to help personal commitment. That’s why he has promised funds Lucas develop motor, from his family trust to establish an endowment that will speech and social skills. They gently introduced him to new sustain PIP for years to come. But you don’t have to be the CEO situations, helping him overcome the challenge of over-stimulation of a children’s hospital to make a difference. In fact, you can join and to learn to engage other children. Today, Lucas loves new toys, Tony in supporting PIP through his two-to-one matching-funds is adjusting smoothly to preschool, and gets along nicely with his gift: your $100 gift will mean $300 for the program, and by giving pint-sized playmates. $500 you can make a $1,500 difference. For over 25 years, PIP has helped thousands of families like the Your gift will be about far more than helping individual Jacksondaleys to cope with developmental disabilities. Facing families, because building an endowment creates a stable source Down syndrome, cerebral palsy, vision and hearing impairments of ongoing funding. And that is crucial. While state budgets may and other types of delays, these parents endure emotional shift from year to year with the political winds, parents like Jackie upheaval, overcome enormous challenges to family life, and often and Lee Jacksondaley will always need somewhere to turn. must navigate a maze of related medical issues. For more information or to support the PIP endowment, The Parent-Infant Program reaches out to some of Northern call Ken McKinney at 510-428-3885, ext. 2846, or email California’s most vulnerable families, yet it’s threatened by state [email protected]. # and local budget cuts.

www.chofoundation.org FALL/WINTER 2004 23

Taking a Stand: Domestic Violence is a Kids’ Health Issue Adam is 9 years old. His parents treas- tion directly to at-risk families, and works ure him. They shower him with gifts and to make the healthcare environment a place attention. They hardly ever raise their voic- where families can safely disclose domestic es at him and would never, ever raise a violence and get help. It is the only special- hand in anger. As for each other, that’s a ized treatment program in Alameda different story. They yell. They fight. County that addresses the link between Sometimes glass breaks, or someone gets domestic violence and child abuse. hit or thrown to the ground. This year, DOVES expanded its mis- Some would say that their problem is sion by becoming the primary on-site not our business—that a children’s hospital health partner at the new Alameda County should tend to Adam’s health and nothing Family Justice Center, which works to pre- more. vent and respond to violence against We believe differently. Adam is a child women. at risk. As a witness to traumatic events, Recognizing the importance of such the stress of his environment may be linked work, the Blue Shield of California to bad behavior, poor performance in Foundation awarded a $100,000 two-year school, sleepless nights, high anxiety, grant to the Center for Child Protection, migraines, future drug or alcohol abuse, which is home to the DOVES project. and a long list of other problems. You too can stand up for families such But identifying and advocating for chil- as Adam’s by helping us expand DOVES dren like Adam is a sensitive issue. That’s outreach programs even further. To find why in 1999, Children’s created the out how, please call Ken McKinney at Domestic Violence Education and 510-428-3885, ext. 2846, email Screening project, or DOVES. The project [email protected], or visit provides education, advocacy and interven- www.chofoundation.org/donate. # Corporate Caring For years, Bay Area busi- support to our commitment to pro- International, Blockbuster, RE/MAX nesses have raised millions of viding the highest level of care in and Credit Union for Kids. # dollars for Children’s Hospital the world to children in need, & Research regardless of their families’ ability Center at to pay. Oakland through Children’s the Children’s Miracle Network Miracle Network. sponsors in 2004 In 2004 alone, included KFRC (host corporate sponsors have raised more of Children’s Radiothon for Kids), than $1.4 million—providing crucial Costco, RiteAid, Wal-Mart, Marriott

To learn more about giving opportunities at Children’s Hospital, please contact Children’s Hospital & Research Center Foundation at 510-428-3814 or visit www.chofoundation.org. 24 CHILDREN’S HANDPRINTS

Lately, pediatri- cian Roxanna Martinez, MD, has been doing something pretty amazing for Latino kids. Because Spanish-speaking children face many barriers to healthcare and health education, she brings her doctor’s office to them. That’s right—in order to serve the kids at four predominantly Latino elementary schools in Alameda County, she pulls up in a converted RV that OUT AND ABOUT serves as the mobile medical In the mobile health unit Leo’s Legacy. A Lasting Legacy clinic, Dr. Roxanna Dr. Martinez and colleague Martinez of Leo’s Legacy Erik Fernandez, MD, supported gives immunizations to by others in the Children’s Spanish-speaking kids to Advance right in their neighbor- community, provide vital basic hood. The program is health services to underserved funded by Marianne and Latino children. They break Latino Healthcare Ronald Dreisbach. down barriers between medical professionals and Latino communities, and fight to provide Spanish-speaking children with access who died in 2002. (To learn to healthcare and health education. about how the Dreisbachs With a partner organization called did that, read the sidebar.) Kerry’s Kids, Leo’s Legacy works to The Dreisbachs’ great ensure students are up-to-date on their idea is growing. In 2003, the immunizations and flu shots and to program doubled its reach educate parents and teachers on good with a generous donation nutrition and the basics of asthma and from the Children’s Hospital diabetes, which are leading causes for Branches and additional hospitalization of Latino children. financial support from In an era of shrinking state and individuals. Leo will not be federal funding for community health forgotten, and his Legacy is services, Leo’s Legacy is truly remarkable. It was the idea of ensuring that the healthcare needs of Latinos will always be a Marianne and Ronald Dreisbach, who established and funded priority at Children’s. # the program in honor of their beloved employee Leo Marquez,

www.legacyforchildrenscare.org FALL/WINTER 2004 25

SMART GIVING: Give a lasting gift Do good (for kids) and do well (for your future) this holiday season! The Dreisbach family’s story is a good example of how Join other donors and employees of Children’s philanthropy at Children’s Hospital can support children’s in securing the future of your hospital! health and be a wise financial decision, too. Here’s how they set up Leo’s Legacy. Deadline for Spring 2005 By transferring highly appreciated stock into a tax- installation: December exempt charitable remainder trust, the Dreisbach 31 family: • Avoided capital gains tax • Received a sizable charitable income tax deduction • Established a long-term income stream • Offset additional taxes by contributing the income stream to their Family Foundation to fund Leo’s Legacy

By setting up a family foundation through the Family Legacy Fund program at Children’s, they: • Have set up a simple, flexible and inexpensive frame- work for charitable giving • Receive the maximum charitable tax deduction avail- able under the law • Advise where the funding they provide is to be used Dedicate a Plaza Brick • Establish an endowment that will exist for generations to a loved one, friend or colleague! or for a set term of years Every day, hundreds of visitors and employees come through the main entrance of Children’s and see And, by combining these two financial planning vehicles, the inscribed bricks which friends and employees of the they enable Children’s Hospital Oakland to reach out to hospital have dedicated in order to honor colleagues, thousands of Latino children in the East Bay. memorialize friends or family members or acknowledge a generous contributor. Visit the main entrance of Children’s The Children’s Hospital & Research Center Foundation and read the moving and inspiring inscriptions. can work with you or your financial advisor to establish a framework for charitable giving that meets your philan- thropic and financial goals. For more information, call Place your request online: www.chofoundation.org Margaret Zywicz at 510-428-3361. # 12’’x12’’ Mission Red Paver - $2,500 THIS IS NOT LEGAL ADVICE. ANY PROSPECTIVE DONOR building # 12’’x12’’ Sand-colored Brick - $1,000 SHOULD SEEK THE ADVICE OF A QUALIFIED LEGAL, blocks # 12’’x 6’’ Plaza Brick – $750 (new item) ESTATE AND/OR TAX PROFESSIONAL TO DETERMINE Children’s Hospital & Research Center at Oakland # 6’’x 6’’ Plaza Brick – $500 (new item) THE CONSEQUENCES OF HIS/HER GIFT. #

For more information on this and other naming and dedication opportunities, please contact: Ken McKinney, Annual Fund Manager, Children’s Hospital & Research Center Foundation, Phone: 510-428-3885 ext. 2846, E-mail: [email protected] 26 CHILDREN’S HANDPRINTS

[CONTINUED FROM PAGE 21]

How has nursing changed over the I’m looking at genetic markers to hope- Line, a phone advice service. years? fully pinpoint the diagnosis. I have a I was doing a second master’s at Patients who are in the hospital are population that we see at Children’s and UCSF to become a nurse practitioner, much sicker because we do a lot of I hope to include other hemophilia when I became a temporary case manag- work at home, or because the insurance treatment centers in the region. er for Hematology/Oncology. I ended companies don’t allow patients to be So will research be a second up staying there for seven years as the admitted to the hospital for certain career? coordinator of the general hematology things, or because they have to be It’ll be number five. I have a master’s service and then the Hemophilia and discharged sooner. degree in early childhood special educa- Thrombosis Treatment Center. On a different note, the field of tion and taught preschool for four years. That is quite a diverse career. How nursing has gotten so much broader. Then I was a child life specialist at the has it changed your understanding Nurses may have a variety of roles. We children’s hospital in Washington, D.C. of nursing? have vice presidents who are nurses. That’s when I decided that nursing It’s amazing how much prouder of Nurses are getting into basic science would be a better fit for me. I went to being a nurse I am and how important I research. work as a tech in the Emergency feel the profession is. I really want to be You are working toward a PhD. What Department, while I attended nursing an advocate for it. is your research about? school. My first job as a nurse was in the _____ One of the frustrations in diagnos- ED. When I transferred to Children’s, I ing von Willebrand’s disease [a common was first an ED nurse, then worked as a Nadine Haley, RN bleeding genetic disorder], is the dis- nurse clinician in the Infectious Disease Day Hospital crepancy in results that you can have department where I was a case manager 17 years at Children’s among different types of labs. There can and research coordinator for the “She can be tough, but she is wonder- be difficulty in making the diagnosis HIV/AIDS program. Then I moved on ful,” one of Nadine’s colleagues said with the tests we have available now, so to help develop the Pediatric Advice about her before the interview. But Nadine’s thoughtfulness and openness give a noble glow to her no-nonsense attitude. In her turf, the Day Hospital, Nadine sends a clear message: patients first, other concerns can wait. Do you think you’re tough? Those who don’t know me may only see my tough side. But people who know me know that there is also a soft side to me. My patients know me as very stern and that I do it because I care. How does your sternness help? I think it can help kids in difficult family situations if there is no consistent authority figure. I’ve also seen kids who are very sick and their parents naturally want to do everything to please them to a point where there are no boundaries. Sometimes having a nurse who sets lim- its helps them. What attracted you to nursing? I was a nurse’s aide in my junior and senior years in high school and all the way through college. It helped finance my education, along with grants and

NADINE WITH OMAR FALL/WINTER 2004 27

loans. It is my third career and there is being a sponge: you have to be able to more to come. I was an analytical chemist absorb, but you also have to be able to President and Chief Executive Officer for a pharmaceutical company for seven release. You have to be flexible because Tony Paap years and a microbiologist for a private lab things change in a heartbeat. Acting Senior Vice President and for five years. Then I went to nursing Physically, when you’re on the floor, Chief Financial Officer school for two years. Right now, I am just you spend 85 to 90 percent of your day Sandy Bemiss finishing my certificate as a legal nurse standing. In the Day Hospital it can vary Interim Senior Vice President and Chief Operations Officer consultant. You can work as a consultant depending on your assignment. Standing David Bertauski for physicians, insurance companies, do and movement are important. But I don’t Senior Vice President and Surgeon-in-Chief evaluations, be an expert witness on mal- think a person who has a physical handi- James Betts, MD practice issues, abuse, etc. I’m also think- cap can be eliminated from nursing, Senior Vice President, External Relations ing of trying to get a real estate license. because what’s on the outside does not Mary L. Dean But before all that, I was a pre-med necessarily play into your ability to be in Interim Senior Vice President, Medical Affairs student. I got accepted and nursing. People in wheel- Howard Gruber, MD I decided not to go. chairs can find something Senior Vice President, Research Bertram Lubin, MD Why did you decide not to do in nursing. Vice President, Legal & Risk Management to go to medical school? How has your work Marva Furmidge I came from an under- changed who you are? Vice President, Ancillary & Support Services privileged home. I was the Any nurse working in James Jackson oldest of five with a single any area, if they have a Vice President & Chief Information Officer parent. Finances were very, caring heart, it’s going to Don Livsey very hard. I worked all the change part of who they Vice President, Nursing way through college, did a are. In Hem/Onc you see Nancy Shibata, RN five-year program in four so many life-or-death Vice President, Human Resources years by studying all year struggles that you treasure Greg Souza round. When I got accept- each moment of each day President, Children’s Hospital & Research ed into medical school, I with your kids. Center at Oakland Foundation NADINE WITH DELILAH Michael Petrini had already gotten the job What have you learned at the pharmaceutical com- Children’s Hospital & from kids? Research Center at Oakland pany. At first I was going to work for six I’ve learned that a kid can tell when Board of Directors months only, but the money was too good. you don’t know what you’re doing. Harold Davis, Chair Pamela Cocks, Vice Chair Did you regret it? Sometimes they’ll give you a chance and Arthur D’Harlingue, MD, Vice Chair I did at the time. I retook the tests and sometimes they’ll be blunt and tell you Robert C. Goshay, PhD, Vice Chair I decided I was going to be a PA. But my that you don’t know what you’re doing. Barbara May, Vice Chair daughter was 2 years old. I had just moved You may have kids who are more experi- Edward Ahearn, MD out here, and the only school I got into enced as patients than nurses as nurses. Jeffrey Cheung was in Los Angeles, so I opted to not go. They’re open, they are honest and playful, Henry Gardner Donald Godbold, PhD What do you like about nursing? which makes it easy for me to be open, Howard Gruber, MD One thing I like about nursing is that honest and playful. Scott Hoffinger, MD you’re not stuck in one area. You can do Can you think of an honest and playful Howard Jackson different specialties and it is easy to keep a thing a kid has told you? Watson M. Laetsch, PhD Alden McElrath sense of growing. When I feel stifled and I just had a patient before I came Masud Mehran feel like I’ve learned all I can learn, I down here who said “I’ve known you for Linda Murphy change areas. 15 years, I’ve loved you for 13, but I liked Betty Jo Olson # What should one be able to do, emo- you for 2.” Tony Paap Howard Pien tionally and physically, to be a nurse? Mary Rutherford, MD Emotionally, you have to be open, not Peter Sheaff, MD rigid but giving and receiving. It’s like Harold C. Warner, PhD

Story requests, comments or suggestions for Children’s HandPrints may be e-mailed directly to Vanya Rainova ([email protected]), or sent to 665 -53rd Street, Oakland, CA 94609. Kids Helping Kids Get Well Holiday Cards ‘04

For many companies and individuals, sending greeting cards to # Benefiting Children’s Hospital & Research Center at Oakland clients, customers, friends and family is an important part of the # Order online at: www.kidsholidaycards.org holiday season. Children’s Hospital & Research Center at Oakland or call (510)428-3814 offers specially designed holiday cards created by Bay Area children. # Presenting some of the best of our 2000-2003 collections

A B C D E F

It’s the most wonderful Wishing you a holiday season May joy surround you Wishing you the gifts time of the year. full of fun and festivities! this holiday season! of the season… Happy Holidays! by Ginger, age 14 by Haley, age 7 Peace, Joy, & Good Cheer! Peace on Earth May this holiday season Wildwood Elementary School, by Jennie, age 12 Castro Valley High School, bring you happiness and peace by Fabiola, age 14 Bret Harte Middle School, by The Crocker Highlands Castro Valley Piedmont Piedmont Middle School, San Jose Adventure Time Morning by Katie, age 13 Piedmont Kindergarten Group Foothill Middle School, ages 5–6, Oakland Walnut Creek K G I L

H J

‘Tis the season to be jolly! by Rose, age 7 (Blank inside) Warm holiday wishes! May your holidays glow… St. Brendan School, Hats off for a happy Merry wishes for with the joy of the season! San Francisco holiday season! by Lisa, age 15 a wonderful season! by Reena, age 12, Adriana, age 8, Alameda High School, & Rachel, age 8 by Rachel, age 13 by Jordan, age 11 Alameda by Alessandra, age 13 San Francisco Bay Girl Scout Piedmont Middle School, Bret Harte Middle School, Piedmont Middle School, Troop 2315, Fremont Piedmont San Jose Piedmont

Please visit our website at www.kidsholidaycards.org to order online or to download an order form, or call (510)428-3814.

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