One in 10 Million

Two months after their son Ricky was born on Dec. 6, 2012, Richard Alcedo and his wife, Wendy, noticed he was getting small bumps on his face.

They took him to several doctors until a dermatologist did a skin test, diagnosing him with JXG (juvenile xanthogranuloma), an extremely rare disease that even in its common form affects only one in 1 million children, typically those 10 or younger.

One physician they consulted gave Alcedo a puzzled look after examining Ricky.

“This is new,” she said, reaching for her iPhone to look up information on the illness afflicting Ricky.

Alcedo knew that moment that he needed to take Ricky to another hospital—one with specialists highly trained in diagnosing and treating rare diseases like JXG, which acts like a cancer and responds to chemotherapy but technically is not a cancer.

“We ended up at CHOC where they had specialists who understood Ricky’s diagnosis,“ said Alcedo,“ and we knew immediately Ricky was in the right hands.”annual-report-2013-one-in-ten-million

Recognizing the rarest cases

Lilibeth Torno, M.D., clinical director of outpatient services and head of ambulatory care services at The Hyundai Cancer Institute at CHOC Children’s, examined Ricky.

She observed the brownish rash on his face and his distended stomach, confirmed that his liver and spleen were enlarged, and ordered MRI and ultrasound tests— something no other physician had done before.

The tests confirmed that Ricky not only had JXG, but systemic JXG—a rare form of the disease that afflicts only one in 10 million children. Dr. Torno started Ricky on mild chemotherapy.

JXG belongs to a group of illnesses called histiocytoses, which are associated with an excess of white blood cells that are supposed to fight infections, but for unknown reasons cluster together, forming bumps or lesions that attack different organs.

In systemic JXG, lesions are present in multiple organs.  Without proper treatment, the disease is fatal.

A team in search of a cure

Dr. Torno is one of 10 physicians at the Cancer Institute who are immersed in such cutting-edge research as molecular and genetic profiling to find out what triggers such diseases as JXG—and what can be done to cure them.

“CHOC Children’s is best equipped to treat such a disease,” Dr. Torno said. “Our goal is to be able to do genetic and molecular profiling of patients to help us understand eventually how these things happen.”

The institute sees close to 200 new patients a year, and many of its specialists are disease specific—for example, doctors assigned to a team for leukemia, and a team for brain tumors. The outpatient clinic provides comprehensive care for children undergoing chemotherapy, as well as those who have completed therapy.

Spreading the word

Dr. Torno says that Ricky is responding well to chemotherapy, which will continue through May 2014.  Then he will be reassessed.  JXG lesions sometimes can turn into tumors.

Although he and his family live just beyond the Orange County border, Alcedo had never heard of CHOC Children’s until Ricky’s godmother suggested he be treated there. Now Alcedo is determined to spread the word about the great care Ricky continues to receive.

To that end, the Alcedo family and Ricky participated in CHOC’s annual Walk in the Park at the Disneyland Resort.   Their goal was to raise $10,000.

The Alcedo family is enjoying Ricky—and resting a little easier knowing he’s in the expert hands of top specialists at CHOC Children’s.

“He’s a happy baby,” Alcedo says.  “He’s always smiling. The nurses have commented that they can’t believe he’s sick because he’s always smiling and happy.

“We are truly grateful for CHOC and everything they have done for us. Not only are they treating our son, but they are giving us peace of mind knowing that Ricky is in capable hands.”

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Tower Gift is a Testament To Long-Term Investment in CHOC

annual-report-2013-bill-holmes-giftBill Holmes’ history-making $27 million gift to CHOC Children’s represents his commitment to ensuring the health and well-being of children in Orange County and beyond.  This extraordinary gift allows CHOC to progress on its journey to becoming the leading destination for children’s health by providing exceptional and innovative care.

The opening of the new seven-story Bill Holmes Tower—colorful and dramatic, a beacon of hope in the heart of Orange County—marks a pivotal moment in CHOC’s proud and eventful history.

Highlights of the new Bill Holmes Tower:

  • The tower has tripled the size of our inpatient care facility in Orange.
  • It contains the region’s only dedicated pediatric emergency department, operating rooms, imaging department and laboratory.
  • New technology and additional resources, as well as world-class talent and research capabilities, combine to make for the best in clinical care, research and education.
  • Safety is built into the tower. Every patient room and operating room is designed as “same handed” with supplies and equipment located in exactly the same places to minimize the potential for human error.
  • An array of interior spaces utilizes light, color and spacious design to help lift spirits and and contribute to a soothing atmosphere that is conducive to healing.
  • Our doctors, nurses and staff employ the latest technology, along with standardized, integrated processes, to deliver the best in pediatric care.

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CHOC Blood Donors: Like Father, Like Son

Since 2006, father and son Jerry and Jeremy Wilcox have had a standing date every eight weeks at CHOC Children’s:  Together, they roll up their sleeves and donate blood.

“We both have the mindset that if we can help people, then we help people,” Jeremy says.  “We may not always have the money to donate to organizations, but we do have time and we do have the ‘good veins.’ Because of that, we are just doing what we can to help those in need.”

The father-son tradition of giving life together is particularly significant with Father’s Day this weekend – as well as the nearing of summertime, which is traditionally a season of low blood donations at CHOC Children’s and blood centers nationwide. At CHOC Children’s, donation rates are typically 20 percent lower during this time.

The Wilcox men’s multi-generational tradition of donating blood extends well past 2006: Jerry’s own father was a frequent donor, which inspired Jerry to begin donating in college. Jerry had a similar influence on Jeremy.

In addition to providing a way to help others, the Wilcox men’s regular donations allow the duo an opportunity to take a break from their busy lives and catch up.

“I enjoy it,” Jerry says. “It’s a chance for us to see each other at least every eight weeks. We walk in, there’s no wait. We get to talk for an hour, and we get great cookies.”

Jerry began donating at CHOC Children’s in 2005 as a participant in the hospital’s Designated Donor Program, which allows blood donations to be directed to a specific patient.

Jeremy’s long tradition of blood donation began in high school. Now the father of two small children, he has a finer understanding of the significance of blood donations in a pediatric setting.

“If my kids got sick, they’d come to CHOC,” he says. “CHOC takes care of me, and I have all the confidence that they would take great care of my children.”

Despite the steadfast commitment from the Wilcox men and other blood donors, CHOC Children’s is in desperate need of blood donations of all types year round. Donations meet just 65 percent of the hospital’s annual need, and blood platelet donations meet just 35 percent of CHOC’s need. To supplement donations, CHOC spends more than $1 million annually to purchase necessary blood.

“Just try donating once,” Jeremy says. “It doesn’t hurt, and it gives you a warm fuzzy feeling that you could really help someone.”

Learn more about blood donation.

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Events To Benefit Kids

ar-2012-choc-walk-in-the-parkCHOC Walk In The Park

The happiest place on earth always seems a little more magical in October. The annual CHOC Walk in The Park at the Disneyland Resort® reunites CHOC Children’s physicians, nurses, Associates, Disney Cast Members and volunteers with patients, former patients and families to support our hospital. This past year, their efforts raised $1.7 million. Since its inception, the CHOC Walk has cumulatively raised more than $20 million to benefit CHOC Children’s programs and services.


CHOC Follies XV

ar-2012-choc-walk-in-the-park2After the first musical production premiered 15 years ago, the CHOC Follies quickly became one of the most anticipated social events of the year. “Christina and the Crystal Ball, a Cinderella Story for the Social Net Set,” this past March, was no exception. More than 90 of Orange County’s business and community leaders performed a hilarious spoof on the classic fairy tale with a modern, online twist. To date, the CHOC Follies has raised close to $6 million to benefit CHOC Children’s programs. This year’s proceeds will support the construction of Seacrest Studios, an interactive broadcast multimedia center that provides patients with an outlet to engage in creative activities related to broadcast media. It’s another step forward in providing avenues of healing for patients at CHOC Children’s. A project of the Ryan Seacrest Foundation, the studio is scheduled to open next year in the hospital’s new seven-story patient care tower.


CHOC Cherishes Children Gala

ar-2012-choc-cherishes-children-logo“Building Bigger Dreams” was the theme of this year’s CHOC Cherishes Children Gala held at the Island Hotel in Newport Beach, in January. More than 300 guests raised $600,000 for the new patient care tower that opens next year.

At the gala, Hyundai Motor America received the “Children’s Champion Award” for making a significant impact on the fight against pediatric cancer. Hyundai, and its nonprofit organization Hope on Wheels®, donated $10 million to CHOC—the largest corporate gift in our hospital’s history.

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