Connections FALL 2017
A newsletter for friends and supporters of UCSF Benioff Children’s Hospitals
UCSF Benioff Children’s Hospitals Rank Among Nation’s Best
Colten, Age 7 Mighty Cancer Warrior As a young boy, Colten Guerra alternated between painful shyness and superhero swagger. A fan of the Incredible Hulk, he would attack imaginary enemies, swinging his tiny fists and shouting, “Hulk smash!” Colten’s active imagination and fighting spirit served him well and earned him the nickname “Hulken” when he battled cancer at UCSF Benioff Children’s Hospital.
UCSF Benioff Children’s Hospitals rank among the best in the nation in nine specialties and the best in the Bay Area in six practices − cancer, diabetes and endocrinology, gastroenterology and GI surgery, neonatology, neurology and neurosurgery, and orthopedics − according to U.S. News & World Report’s 2017-2018 Best Children’s Hospitals survey. “I want to congratulate our physicians, the rest of our clinical team, and our staff for their commitment to expert and compassionate care of our patients,” said UCSF Benioff Children’s Hospitals president Michael Anderson, MD. “These rankings reflect the combined strength of our children’s hospitals in Oakland and San Francisco as well as the world-class research that supports our programs and services.” The rankings reflect clinical outcomes, infection rates, and complications; the level and quality of hospital resources related to patient care, such as staffing, technology, and special services; delivery of health care, such as programs that prevent infection and adherence to best practices; and expert opinion among pediatric specialists. The complete rankings for UCSF Benioff Children’s Hospitals for 2017-2018 are:
After a month of fevers, anemia, and pain in his leg, 4-year-old Colten was diagnosed in 2015 with stage 4 high-risk neuroblastoma, a rare and aggressive form of nerve cancer. As is typical with the disease, symptoms didn’t appear until the cancer had already spread throughout his body. “From the beginning, we realized that the best path forward would be to appeal to the ‘strong warrior’ that had always been such a big part of Colten’s personality,” says his mother, Michelle. Michelle and her husband, Tim, personified cancer as an enemy that the mighty Hulken would certainly defeat because the doctors tested his blood and found “super Hulk soldiers” inside him. At that moment, Colten was no longer scared and instead felt invincible. Likewise, when Colten underwent a 10-hour surgery to remove the primary tumor from his kidney, his parents explained it as removing the “bad guy’s base headquarters.” A tube that supplied nutrition through his nose became his “super tube,” and chemo was dubbed “super medicine.” Following his diagnosis, Colten spent more than 240 nights in the hospital over the next two years. He lived up to his warrior persona, walking the halls dressed as Yoda and challenging staff members to thumb wars and breakdancing battles. “The medical and support staff were completely charmed by his antics,” Michelle says. “We’ll be forever grateful for everyone at the hospital who went to extraordinary lengths to help our son.”
#10 Diabetes and Endocrinology* #10 Neonatology* #14 Cancer* #14 Nephrology #17 Gastroenterology and GI surgery* #22 Orthopedics*
Colten was the first UCSF patient to receive a combination treatment − immunotherapy with chemotherapy − approved by the FDA only months earlier.
#27 Pulmonology #29 Neurology and Neurosurgery* #36 Cardiology and Heart Surgery
The full list of children’s hospital rankings is available online and will be published in the Best Hospitals print guide. *Ranked Best in the Bay Area
“I’ll never forget when Dr. Gustafson walked into our room and with tears in his eyes, delivered the joyful news that Colten had gone from 12 cancer locations to barely one,” Michelle says.
Seven-year-old Colten used his super powers of strength and courage to combat cancer.
A few weeks later, after completing his second cycle of treatment, Colten was declared cancer-free. But he still had a long way to go: a stem cell transplant, radiation, and more immunotherapy, followed by eight months of isolation at home. The 7-year-old still battles iron overload and hypothyroidism, but he enjoys being at home with his family and new kitten and loves swimming and karate. Colten recently began attending school full-time for the first time. “It feels like our lives have just begun, and we are definitely making up for lost time,” Michelle says. Thankful for Colten’s triumph in battle, Michelle is now doing her part to combat his enemy.
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It feels like our lives have just begun, and we are definitely making up for lost time.
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− Michelle Guerra, Colten’s mom
“I’ve committed myself to fighting to get resources for research into childhood cancer, which is terribly underfunded,” Michelle says. “Hopefully the day will come when children no longer have to fight these terrible wars and everyone will smash cancer.”
INSIDE THIS EDITION
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Mighty Cancer Warrior U.S. News & World Report
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Many Happy Returns Swim Across America A Family Tradition
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Stem Cell Science Pierre’s Birthday Fund Gala A Starry Night
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Upcoming Events CHAMPS Be Gold Campaign
CONNECTIONS
FALL 2017
Many Happy Returns
Making Waves To Fight Childhood Cancer
One-year-old Elias will never remember all the doctors, nurses, and other health care professionals who took care of him for the first five months of his life, but his parents, Gabriela and Rogelio Ramirez, will never forget them. Elias was born at just 22 weeks − tiny, with almost translucent skin − and doctors at his local hospital in Stockton had him rushed to the Neonatal Intensive Care Unit (NICU) at UCSF Benioff Children’s Hospital Oakland. “I’m so happy they made that decision,” Gabriela says. “That’s why I have my baby now.” Every year, our Oakland NICU team cares for more than 400 babies like Elias − infants barely clinging to life. As a regional referral center for neonatal intensive care, the hospital also serves full-term babies with congenital abnormalities that require surgery, as well as babies that are devastatingly ill. At 3 weeks old, Elias needed surgery to repair his intestines, followed by laser eye surgery to treat abnormal vessels that were threatening his retinas. He was also treated for bleeding in his brain and experienced difficulty breathing. After more than five months at the hospital, Elias was finally able to go home. “It was so hard for me, but I got so much support,” Gabriela says. “The social workers, nurses, doctors − they became like family.” Now, she says, Elias is just like any other little boy. He babbles constantly, loves animals, and adores his big brother, Henry. In June, Elias and his family attended the 39th annual NICU Reunion on our Oakland campus
Born at just 22 weeks, Elias Ramirez spent the first five months of his life at our Oakland NICU. He is pictured here with his parents, Gabriela and Rogelio, and older brother, Henry. Photo by Debbie Lee
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It was so hard for me, but I got so much support.
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Days later, Avery and her parents, Walter and Karen, met Peter Sun, MD, division chief of the UCSF Benioff Oakland neurosurgery team and the first recipient of the John S. and Sherry H. Chen Professorship in Clinical Neurosurgery. Dr. Sun diagnosed Avery with pilocytic astrocytoma, a benign tumor that is only curable through surgery. UCSF BENIOFF CHILDREN’S HOSPITALS FOUNDATION
Team Grant has since blossomed into a group of 50 swimmers and raised an impressive $680,000. The team includes Howard Rosenfeld, MD, the cardiologist on our Oakland campus who first discovered Grant’s tumor. Rosenfeld swims in the event with Grant’s family every year.
to celebrate with his care team. More than 600 NICU graduates and their loved ones were in attendance, enjoying carnival-style fun like a bounce house, balloon animals, and face painting. “His nurses were surprised to see how big he was. They couldn’t believe it was him,” Gabriela says.
“This is my revenge on cancer,” shares Desanne as she prepares for the swim. “I’ve wanted to set the tone for my family and community that when horrible things happen, beautiful things can come from that. And I want to show them that when life knocks you down, you can fight back.”
Looking back on her son’s first year, she feels extremely lucky. “His doctors said it was a miracle he was alive,” she says. “To know I have my baby thanks to them is such a blessing.”
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At a school dance last February, Avery Sweet danced for hours. But she wasn’t just a typical teenager living it up with her friends.
During a routine checkup, Avery mentioned having bouts of dizziness. Her doctor ordered an MRI to rule out anything serious. Instead, it revealed a brain tumor the size of a golf ball on her cerebellum.
Desanne’s 7-year-old son, Grant, was diagnosed with a rare kidney cancer in 2007. After a tough battle with the disease, Grant was declared cancerfree in 2008, the year Desanne’s first team of six participated in the 1.75-mile fundraising swim.
– Gabriela Ramirez, Elias’ mom
A Family Tradition of Philanthropy
Avery was following a family tradition of giving to UCSF Benioff Children’s Hospital Oakland, where a frightening discovery two years earlier turned into the best news her parents could hope for.
On September 17, Desanne Martin will take her 10th plunge into San Francisco Bay’s chilly waters for Swim Across America, a benefit swim for cancer research and treatment at UCSF Benioff Children’s Hospitals.
If there is good to come out of this, it’s that she is taking her experience and turning it around to help others.
– Walter Sweet, Avery’s dad
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Mindy (left) and Peter Sun, MD celebrating at our Notes & Words event with Avery, Karen, Will, and Walter Sweet.
“The first words out of Dr. Sun’s mouth were, ‘We’re going to fix this,’” Walter says. “In such a crazy crisis, he was so confident.” Just 15 days after the tumor was discovered, Avery underwent a 16-hour surgery to remove it. Immediately after waking, she tweeted, “I beat brain surgery today, how about you?” Avery is now an avid cheerleader about to start her senior year, and her family thanks Children’s for making that possible. To show their gratitude, her parents and older brother are supporting the hospital’s master plan, which includes a state-of-the-art, 89,000-square-foot outpatient clinic, slated to open next year.
“It’s rewarding to thank the hospital for what they do for the community,” Walter says. Avery is also a vocal advocate for the hospital. “I feel like the hospital doesn’t get enough recognition, and knowing that they saved my life, I want to give back,” she says. She has shared her story at our radiothon last spring and at other events, and she was the top fundraiser for a school dance-a-thon event benefitting our patients. She has also volunteered in Dr. Sun’s clinic. “You talk about making lemonade out of lemons,” Walter says. “If there is something good to come out of this, it’s that she is taking her experience and turning it around to help others. I think it’s fantastic.” GIVE.UCSFBENIOFFCHILDRENS.ORG
CONNECTIONS
FALL 2017
Sowing the Seeds of Stem Cell Research
Pierre’s Birthday Fund Gala Celebration
Ophir Klein is growing teeth, which is just slightly less odd than what Jeffrey Bush is growing – tissues that make up the face. Jason Pomerantz is growing muscle, Sarah Knox is growing salivary glands, and Edward Hsiao is printing 3-D bone using a machine that looks about as complex as a clock radio. Together, these UCSF faculty members are cultivating organs of the skull and face – known as the craniofacial complex – which too often go terribly wrong during fetal development. Deformities of these bones or soft tissues − the most common birth defects − can cut life short by blocking the airway or circulation, or they can disfigure a face so profoundly that the child struggles to see, hear, or talk. Most painfully, such deformities can render children physically “other,” potentially leading to a lifetime of corrective surgeries and social isolation. As director of the UCSF Program in Craniofacial Biology, Klein orchestrates a multisite research endeavor to translate tissue regeneration science into improved treatments for these kids. Using stem cells from patients with craniofacial deformities, Klein, Bush, Pomerantz, Knox, Hsiao, and their colleagues are growing tiny, functioning segments of organs, called organoids, to pinpoint when and how such design flaws occur during fetal development. They are among a number of scientists across UCSF who are cultivating cellular systems, such as miniature brains and breasts, from patient cells. The organoids serve as dioramas
Pierre Schreyer was known for his sense of humor, his sense of style, and his sense of all things French. He also proved to be courageous when faced with a stage 4 cancer diagnosis during his junior year of high school.
Drs. Ophir Klein and Jeffrey Bush are harnessing stem cells to understand and treat craniofacial deformities. Photo by Steve Babuljak
of disease – models derived from human cells – either displacing or complementing the mouse models that have served science well, though inexactly, for years.
After spending his 17th birthday at UCSF Benioff Oakland, he noticed many other kids were also there during their birthdays. He started Pierre’s Birthday Fund to provide young patients with a personalized gift to commemorate their special day.
The effort is one of the most viable payoffs to date from stem cell science. With these organoids, physicians and scientists can not only trace the pathways of normal and abnormal development but also test treatments for effectiveness in humans.
His support for the hospitals did not stop there. Pierre also helped fund new bingo prizes and new video-gaming units on wheels for every floor of the hospital. When he passed away in 2015, Pierre’s family formally established Pierre’s Birthday Fund in order to carry out his vision of supporting children who are struggling with their health.
“The next decade will be an incredibly exciting time,” says Klein. “With continual advances in human genetics and developmental and cell biology, we hope to be able to make drugs and use genetic tools to appreciably change the lives of our patients.”
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The next decade will be an incredibly exciting time. − Ophir Klein, MD
The second annual Pierre’s Birthday Party Gala was held on July 16, raising more than $30,000 to support children’s hospital programs. More than 200 people, including Pierre’s nurses (pictured above), enjoyed a night of dancing, food trucks, bingo, and a silent auction − and honored the generous spirit of the fund’s namesake.
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A Starry Night Crippling pain prevented Hailey from being her spunky self, until treatment for ulcerative colitis at UCSF Benioff Children’s Hospital San Francisco helped her turn the corner. Now the 6-year-old has her energy back and revels in her favorite activities: tennis, swimming, biking, and gymnastics. At age 2, Hailey started having debilitating stomach cramps and bloody stools. But it took more than a year − filled with trips to the emergency room and various tests − to understand why. The key was meeting Mel Heyman, MD, director of the Pediatric Inflammatory Bowel Disease Program on our San Francisco campus. This specialized program provides comprehensive diagnosis and treatment for children and adolescents suffering from inflammatory bowel diseases such as Crohn’s disease, ulcerative colitis, and other intestinal disorders. “When Hailey got into Dr. Heyman’s care, he immediately took an active, genuine interest in helping her. Our first appointment was more
UCSF BENIOFF CHILDREN’S HOSPITALS FOUNDATION
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A gift to education is a gift in perpetuity because it keeps the research going.
Six-year-old Hailey with Dr. Mel Heyman, director of the Pediatric Inflammatory Bowel Disease Program at UCSF.
than two hours,” says her mother, Allison Handy. “We were amazed by what he did for her.” With the right diagnosis and medicine, Hailey has been mostly in remission for about two years. But she’ll never be free of the disease unless medical research can find a cure. Like Hailey, as many as 100,000 kids in the US suffer from chronic bowel disorders. “I just have to wait and wonder when the next flare will hit,” Allison says.
− Allison Handy, Hailey’s mom
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In February, Allison and her husband, Breck, organized A Starry Night, gathering 150 community and corporate leaders at the Hilton San Francisco Financial District in a ballroom decorated to shimmer like a clear night sky. The festive event supported Dr. Heyman’s work in research and education, raising more than $90,000. “Dr. Heyman makes a great point: This money will help train the next generation of doctors, who will then go on to train the next generation,” Allison says. “A gift to education is a gift in perpetuity because it keeps the research going.”
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University of California, San Francisco Box 0248 San Francisco, CA 94143 BOARD OF DIRECTORS: Michael Anderson, MD David Beier Valli Benesch Lynne Benioff Thomas Bret Farah Champsi Jeffrey Cheung Charles Cole III Timothy Kendall Talmadge King Jr, MD Carolyn Klebanoff, MD
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UPCOMING EVENTS
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UCSF Medical Center Celebrity Golf Classic Mayacama Golf Club
October
Join us for a day on the green to benefit our kids.
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Jazz Jam Session
October
Yoshi’s Enjoy an afternoon of jazz with Bay Area Youth Musicians.
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November
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November
Extra Life Gaming Marathon Online or Wherever You Are! Sign up for the biggest gaming charity event of the year.
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The Concert for UCSF Benioff Children’s Hospitals
November
AT&T Park For tickets go to: theconcertforkids.com
Red, White & Rosé Gala Diablo Country Club Celebrate fall at the Rowan Branch gala.
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CONNECTIONS
FALL 2017
CHAMPS: A Pathway to the Future Edwin Guajardo recently headed off to UC Merced, where he’ll major in biology. From there, he plans to enter medical school, with the goal of becoming a cardiologist. Unlike most 18-year-olds, Edwin already has real-world experience in the medical field. He was one of the nearly 100 students who annually participate in the Community Health and Adolescent Mentoring Program for Success (CHAMPS) on our Oakland campus. The three-year internship introduces underrepresented minority high school students to health professions. Students participate in clinical rotations throughout the hospital and receive tutoring, guidance on applying to college, and psychosocial support. Most participants are from low-income families, and more than half are the first in their families to attend college. Edwin’s experience was especially meaningful for him given his personal experience with UCSF Benioff Oakland: He’s a cardiology patient, diagnosed with a heart rhythm disorder during his sophomore year.
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Yamelei Castro, Be Gold champion
CHAMPS gives high schoolers like Edwin Guajardo direct access to health care training on our Oakland campus.
Since launching in 2000, CHAMPS has proven remarkably successful. The high school graduation rate for CHAMPS students is 96 percent − compared to 65 percent for the Oakland Unified School District last year − and every CHAMPS graduate will go on to college, while fewer than half of Oakland grads will. “Our students and their families face an extraordinary number of challenges, including the loss of family members, financial challenges, and immigration issues,” says Young Kim Parker, who has managed the program for eight years. “But they stay hopeful and focus on changing their lives, their families’ lives, their community. Their resiliency is just phenomenal.” The CHAMPS program is made possible in part by The California Wellness Foundation and the Warriors Community Foundation.
Be Gold for Kids On September 1, UCSF Benioff Children’s Hospitals launched the inaugural Be Gold campaign to raise $1 million for childhood cancer. During this monthlong campaign, we are encouraging local businesses and the community at large to help the more than 1,500 young cancer patients who receive treatment on our campuses every year. As a national leader in pediatric cancer care, we are here for these kids every step of the way. Those committed to Be Gold throughout the month of September include the San Francisco Giants, the Posey Family Foundation, Morgan Stanley, Ike’s Love and Sandwiches, Kendra Scott, and many more. For more information about how to get involved, visit begold4kids.org.
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