CHOC Patient Inspired to Become CHOC Doc

Vanessa Avina, with her father and Dr. Chang.
Vanessa Avina, center, with her father and Dr. Chang.

At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist Dr. Anthony Chang recognized her curiosity and through the years nurtured her interest in the field of medicine. When Vanessa was 17, Dr. Chang encouraged her to participate in the hospital’s Sharon Disney Lund Medical Intelligence and Innovations Institute’s (MI3) internship program. Vanessa jumped at the chance and is now—two years later—majoring in pre-med biology at California State University, San Bernardino.

The MI3 internship program is designed to offer the brightest high school and college students in Southern California with meaningful experiences in medicine. Interns have the opportunity to shadow CHOC physicians as they conduct rounds in the hospital and see patients in the clinics. They research and present exciting topics related to the future of pediatric medicine, and attend special field trips, including this year meeting Dr. Eric Topol. A practicing cardiologist, professor of genomics and director of the Scripps Translational Science Institute in La Jolla, Dr. Topol is one of the top 10 most-cited researchers in medicine. His special interest is digital innovative technologies designed to reshape the future of medicine.

Vanessa particularly enjoyed meeting Dr. Topol and learning how he focuses on the most important development in health care today – putting the patients at the center of everything clinicians do. She’s quick to point out that her mentor, Dr. Chang, and the other CHOC physicians she has met share that viewpoint.

“It’s clear that CHOC physicians put patients and families first, and partner with them to advance treatment and care.   I experienced that as a patient and I have witnessed that time and again throughout my internship,” said Vanessa.

While Vanessa isn’t quite sure what field of medicine she wants to pursue, her experience with CHOC has solidified her interest in pediatrics. “I’ve learned so much from so many CHOC subspecialists.  They’ve truly sparked my interest in so many different specialties, from infectious diseases to oncology. They’ve especially inspired me to continue to realize my dream of practicing pediatric medicine, bringing hope to children and their families,” explained Vanessa.

A college sophomore, Vanessa knows she has a long road ahead of her, including medical school, residency and fellowship. But the 19-year-old, who will be the first in her family to graduate from college, is determined to become the kind of physician her mentor, Dr. Chang, would want her to be.

“Dr. Chang is an incredible doctor. He’s so smart and innovative. He also has an amazing bedside manner. He has been such an inspiration to me, motivating me to continue on with my dream of working at CHOC,” said Vanessa.

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CHOC Walk in the Park: Justin’s Helpers

As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to advance the health and well-being of children. This year, 15,000 people will participate in the largest pediatric children’s walk in the country. Walkers participate to support a variety of causes and patients and many teams have a deeply personal reason for participating.

Tricia and Colby Helper’s son Justin was born with lissencephaly, a rare brain disorder that, for Justin, brings seizures, chronic lung disease, and gastrointestinal complications, and usually at least three stays per year at CHOC.

For the past eight years, Justin’s family has been by his side as he bravely fights this chronic illness. This will be the fourth year that their team, Justin’s Helpers, will participate in CHOC Walk to support Justin.

“We were just so thankful for the hard work CHOC has done to keep him stable and let him come home,” Tricia said about getting involved with CHOC Walk. “No one really wants to go to the hospital, but CHOC is a warm, positive and inviting environment. It’s our home away from home.”

Over the past three years, Justin’s Helpers, formerly Team Jussy Bear, has raised more than $16,000. The 2015 team is made up of more than 90 members. The team hosts a bunco game night fundraiser at Justin’s family’s home, in addition to partnering with local organizations that support Justin’s journey. Joining that support group this year are Justin’s sister’s Girl Scout Troop 11304, as well as St. Lucy’s Priory High School in Glendora, Calif., where Tricia attended and later was a counselor for 10 years, before leaving to care for Justin full-time. Justin and Tricia recently paid a visit to St. Lucy’s, where they educated students and staff on Justin’s condition, and shared stories on their involvement with CHOC Walk.

CHOC Walk: Justin's Helpers

The day of the Walk can be an emotional one for Justin’s family and friends, but they always aim to make it a fun and memorable day for their team as well.

“It takes you back and you really feel that community,” said Tricia. “It’s a community that feels the support and love from everyone around them. They’re there to support the child they’re walking for, and for the hospital as well. It’s a wonderful feeling”

For more information on CHOC “Walk in the Park,” click here.

A Bright Future: Ian and Micah’s Story

Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially gratifying to meet people who have reached special milestones and enjoy bright futures thanks to their treatment at CHOC.

Today, I want to introduce you to two such patients, Ian and Micah Rogers, who recently overcame some big obstacles to earn a huge accomplishment.

In front of a standing-room only crowd, Ian and Micah Rogers recently kicked, punched and sparred their way toward a black belt in karate.

Attaining a black belt would be a proud achievement for anybody. But for the two brothers, the accomplishment is even more significant given their rare form of muscular dystrophy, diagnosed by CHOC Children’s metabolic disorders specialists about eight years ago.

“People might think that because I have muscular dystrophy, I cannot do anything,” Micah, 10, wrote in an essay. “But I proved them wrong. … Earning my black belt gives me hope that I can be tougher and could accomplish lots of stuff even though it’s harder for my body.”

Micah was first diagnosed after a series of blood tests and muscle biopsies. By his 12-month doctor’s appointment, his doctor suspected something was wrong and he was ultimately diagnosed with muscular dystrophy.

Micah’s mother, Akemi, knew his older brother, Ian, had the same condition. As a baby, Ian had difficulty holding his head up while on his stomach. He was quickly passed by his friends while going up stairs, and he got tired after passing just a few houses on his tricycle. Following Micah’s diagnosis, Ian also tested positive.

Further genetic testing by Dr. Jose Abdenur, division chief of metabolic disorders at CHOC, refined the boys’ diagnosis to a type of Fukuyama congenital muscular dystrophy. Fukuyama CMD is a progressive degenerative disease that affects the brain, eyes and muscles. Because the Rogers boys were the first to be discovered with this specific condition, they have an unknown prognosis.

Rogers_CHOC_2
The Rogers brothers with their sensei.

“In the beginning, I was very afraid,” Akemi says. “I wasn’t sure if they were going to walk next month, or talk next year. I felt like life was so fragile.”

Faith, time and the care of CHOC specialists gave the family resilience and hope. And participating in karate has helped greatly: In 2010, Micah and Ian began training at Karate for All, an occupational therapy karate program designed for children and adults with special needs.

“It keeps them limber because they do stretching,” Akemi says. “It gives them confidence and agility.”

Writes Micah, “(Karate) gave me strong legs. It made me more focused. It gave me better balance. It taught me how to relax.”

While physically challenging for the boys, the black belt test was equally challenging emotionally for Akemi and husband, Randy, and the many friends and family who attended the milestone event.

“Everyone knew this was not a normal black belt test,” Akemi says. “They’re walking miracles. They have normal vision and intelligence, and are breaking boards – though that could all change.”

“Today, there may be no cure for muscular dystrophy, but muscular dystrophy is curing us of wasted worry and wasted pursuits, and teaching us to savor our time with our kids. We’re so proud of them.”

But for now, the boys continue to persevere, seeing a variety of CHOC specialists throughout the year and are great big brothers. And they plan to take their responsibilities as black belts very seriously.

“Your duty as a black belt is to love everyone around you,” Ian, 12, wrote in his essay. “Then and only then, will you be a black belt.”

 

Dominique’s story

With a dream of becoming a pediatrician one day, Dominique Keane-Cawrse’s professional inspiration is close to her heart.

The CHOC Children’s patient has a heart condition called tetralogy of fallot, a birth defect that includes four anomalies in the heart and requires lifelong treatment.

“I’ve wanted to be a doctor for as long as I can remember,” says Dominique, 15. “I’m sure it’s because of my condition.”

Dominique recently underwent a valve replacement at CHOC to widen a narrow pulmonary valve, a hallmark of tetralogy of fallot.

A narrow pulmonary valve is the first of the anomalies present in a patient with this condition. The valve cannot fully open, which causes the heart to work harder to pump blood. This is called pulmonary stenosis.

Second, an enlarged aortic valve is located between the left and right ventricle, rather than being attached to the left ventricle in a normal heart.

Thirdly, the patient’s right ventricle muscle is thicker than normal, a product of the heart working harder to pump blood through the narrowed pulmonary valve.

And finally, patients with tetralogy of fallot have a hole in the septum separating the two sides of the heart. This defect is called a ventricular septal defect.

All together, these four anomalies cause inadequate amounts of blood reach the lungs for oxygen and then oxygen-deficient blood circulates throughout the body.

Already, Dominique had her first heart surgery when she was just four months old, says her mother, Donna.

Because tetralogy of fallot is a lifelong condition, patients typically have procedures periodically throughout their lifetime, hence the recent second surgery at CHOC.

“She’s grown four inches in the last year,” Donna says. “Her heart couldn’t keep up and it was time for a new valve.”

As she ages, Dominique can expect future procedures, but that’s not stopping her from pursuing her dreams.

An incoming sophomore, Dominque is enrolled in a rigorous medical magnet program at JSerra High School in San Juan Capistrano that gears students for careers in medicine.

“It’s a competitive program for top students,” says Donna, adding that her daughter has a 4.4 grade point average.

But while maintaining her grades, Dominique still finds time to participate in sports. She enjoys ice skating and is an avid golfer who made her school’s varsity team as a freshman.

Dominique is also already giving back to CHOC: Recently, she lent her artistic talents to a fundraiser at Downtown Disney that benefited the hospital.

Learn more about CHOC Children’s Heart Institute

Read more stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

A Bright Future: Amy’s Story

The greatest thing about spending as much time as I do at CHOC Children’s is meeting new people – especially others like me who have bright futures thanks to CHOC.

Let me introduce you to Amy. She loves preschool, just celebrated her fourth birthday, and has come a long way since her time in CHOC’s Small Baby Unit.

AmyThough her party was low-key – some cake and fun at a local lake – Amy’s recent fourth birthday party held special significance.

After all, her parents wondered when she was born if she’d ever see her first birthday, much less her fourth.

“She is our little miracle,” says mom Vanessa.

Weighing just 1 pound, 9 ounces, Amy was born after just 23 weeks gestation in 2010.

By the time Vanessa, a first-time mother, learned the pain she was experiencing was actually early labor, it was too late for doctors to attempt to stop Amy from coming.

Once the tiny infant was born, doctors questioned her survival, and a terrified Vanessa and her husband, Alex, prepared for the worst.

Luckily, CHOC’s Small Baby Unit was ready for Amy. She spent 144 days in the special unit, a part of the hospital’s neonatal intensive care unit dedicated to babies born extremely premature.

There, CHOC physicians and nurses offered dedicated and coordinated care, while Vanessa stood by, ready to nurse and cuddle. Alex diligently visited his daughter, stopping by every morning at 3 a.m. after his work shift ended.

“The nurses let me help with her,” Vanessa recalls. “I learned to change her tiny diaper, bathe her and feed her.”

So, when it was time to go home, Vanessa felt capable of caring for her still tiny baby. Equipped with a feeding tube, oxygen supply and heart-rate monitor, Amy still had a long way to go.

Fast forward four years, after feeding therapy and some procedures, Amy is a typical little girl, with big brown eyes and a joyful smile. She attends preschool four days a week, and is outgoing and gregarious.

“We love CHOC because we have Amy, and we don’t know how pay back this miracle,” Vanessa says.

A Bright Future: Bill’s Story

After 50 years of care, CHOC Children’s has no shortage of inspiring people who attribute their bright futures to the hospital. I just met another: Bill Wells, who began treatment for leukemia in 1970 and is now a hospital chaplain.

Bill WellsEach and every day in his work as a hospital chaplain in Orange County, Bill Wells draws on his experience as a patient at CHOC Children’s decades ago.

“What is most important to me in this story is the memory that I have of CHOC, the people, physicians and staff,” he says. “It was always about compassion and caring and being available to children on a level that meets their needs. That has had a huge influence on me and my work as a hospital chaplain.”

Bill, now 50, began treatment for acute lymphoblastic leukemia (ALL) at CHOC in 1970 at the age of 7. A Tustin native, Bill recalls experiencing bad pain in his legs, as well as frequent fevers and colds.

Though his pain was initially dismissed by a physician as growing pains and the fevers as the flu, a second opinion led to fast admission and diagnosis at CHOC. There, Bill briefly went on the standard treatment, but then was selected for a new experimental protocol, he says.

At the time, children with ALL had a life expectancy of only two or three years, and the probability of living five or more years beyond diagnosis was zero, Bill recalled.

One of Bill’s strongest memories of his time at CHOC was listening to a nurse sing to him.

“I had the most awesome nurses,” he says. “One nurse used to sing all the time. What that said to me was that she cared a ton about me.”

After five years of chemotherapy and hospitalizations, Bill’s parents stopped therapy at his physician’s recommendation. He then began regular checkups, bone marrow aspirations, spinal taps and blood work that tapered off until he was about 19 years old.

The cancer never returned, but Bill’s experience at CHOC left a lasting impression. Possibly setting the stage for his career, Bill began serving as a mentor and friend to other young people undergoing cancer treatment at CHOC shortly after he ended therapy.

In 2002, Bill reflected on that volunteer experience when he found himself taking stock of his life’s accomplishments. Though he was enjoying a career as a successful musician, Bill wanted more meaning to his life and considered pursuing a career as a hospital chaplain.

“I kept asking myself, ‘If I died tomorrow, would I be satisfied with my life?’” he says. “My answer was no.”

Bill went on to earn two graduate degrees, complete chaplain training programs at three hospitals, and become ordained as an Episcopal priest.

When Bill began a hospital internship at UCLA, he requested to serve in pediatrics and pediatric oncology. His supervisor asked how his own experience with cancer and hospitalization would affect his work. Bill didn’t think it would do so much at all – but he quickly realized he was wrong.

“I have learned a great deal since that first, incredibly naïve day,” says Bill, who now serves as a chaplain for two Orange County hospitals. “My life, your life, our stories, have gifted us with experiences that have taught us compassion and have set us on a path of using our hands, our minds and our hearts to help others.”

Carter was diagnosed with a rare form of liver cancer but is now cancer free thanks to CHOC.

carterKara Kipp has been a member of the Glass Slipper Guild for the past nine years. She and her husband Matt are the proud parents of three amazing boys, Bennett, Carter and Davis.

On April 17, 2009 their son Carter, seemingly healthy 22-month old was diagnosed with a rare form of liver cancer called hepatoblastoma. Less than 48 hours after being diagnosed, Carter was checked into CHOC Children’s and the oncology floor became their reality. Carter’s road map of action entailed four rounds of chemotherapy, then resection surgery and liver transplant, followed by two more rounds of chemotherapy. Carter did remarkably well from his transplant and after four weeks of recovery, went into CHOC for his final two rounds of chemo. Carter is now having follow-up scans and blood work done, and everything looks great for Carter. Carter has been cancer-free for four years.

The nurses and doctors at CHOC became the Kipps extended family, and Carter still considers them his closest friends. Not having an opportunity to interact with other kids his age, he thinks it’s perfectly normal to have so many doctors and nurses as his buddies.

The Kipp Family is forever grateful for CHOC and their leadership in making their son cancer-free.

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A Bright Future: Amy’s and Emily’s story

I’m more than half way through my 50-week CHOC gratitude tour, and I just met two others who want to join me in thanking the hospital for our bright futures: Meet Amy and Emily.

Sisters Amy and Emily believe they IMAGE_2have two birthdays: the days they were born, and the days they were diagnosed with cancer before beginning treatment at CHOC Children’s.

Each day is met with equal celebration. Amy and Emily, ages 29 and 18, see the anniversary or their diagnosis – their cancerversary – as the day they began the long road toward health.

“We think that’s the day of them starting to get better,” says their mother, Denise Justiniano. “We made that day a good memory. We eat dinner together as a family and make a fun time out of it.”

Both women received treatment as children at the Hyundai Cancer Institute at CHOC. Amy spent six months in the hospital after being diagnosed with lymphoma in 2001. Diagnosed with leukemia in 2008, Emily still receives treatment at CHOC’s outpatient infusion clinic.

And today both women are moving forward: Emily graduated from high school last June and is now in her second semester at college. About seven months ago, Amy gave birth to her second daughter.

“The nurses and doctors at CHOC are amazing,” Amy says. “Not only do they offer the best medical care, but they are empathetic and caring, and offer emotional support in a way that you would expect only a friend to. If it weren’t for CHOC, I wouldn’t be here today. They made a huge difference in my life and helped me become the person that I am today.”

Watching two children battle cancer was heart-wrenching, but Denise credits CHOC staff and fellow families and patients with helping to ease the experience.

“When we first arrived at CHOC with Amy, everyone came out of their room as we were coming down the hall,” she says. “They’re were talking to us, patting us on the back. It was like a warm hug.”

And their time at CHOC made an impression on more than Amy’s and Emily’s health: Amy is a nurse at a local hospital, and Emily is pursuing a career as a nurse practitioner.

“For us, it was the nurses who made CHOC home for us and made it manageable and joked with us,” Denise says.

And CHOC’s impression has extended further into the Justiniano family: Inspired by the CHOC child life staff who helped her sisters cope with hospitalization, a third daughter, Sarah, volunteers at CHOC and is pursuing a career in the child life department.

 

A Bright Future: Pacer’s Story

There’s no shortage of cool patients in these parts, and I just met another who has CHOC to thank for a bright future.

Pacer’s first family meal didn’t happen until he was 4 years old. Until then, he ate through a feeding tube, never experiencing a Thanksgiving feast, Halloween candy or birthday cake. But thanks to his commitment and five weeks of treatment at CHOC’s Multidisciplinary Feeding Program, Pacer learned to eat, and now he can down more chicken fingers than this always hungry bear!

Meet Pacer in this video, and hear from his parents, Quinn and Mekell, about why they traveled all the way from Montana to Orange County to get Pacer the treatment he needed to ensure a bright future.

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...

Meet CHOC’s first patient, Ken Spicer

Of all the people I’ve met since I first visited CHOC Children’s almost 50 years ago, Ken Spicer is one of my favorites. After all, he is CHOC’s very first patient!

Ken and I go way back: He was first admitted to CHOC on Oct. 5, 1964 at age 12 because of a birth defect in his legs, and he remains a steadfast advocate CHOC almost 50 years later. Best of all, he and I are still friends.

In this video, Ken reflects on his experience at CHOC and how his time at Orange County’s only children’s hospital helped him build a bright future.

More stories about CHOC patients:

  • CHOC Patient Inspired to Become CHOC Doc
    At 6 years old, Vanessa Avina was more interested in viewing the monitor for her echocardiography (heart ultrasound) than watching a cartoon during her doctor’s visits. Her CHOC pediatric cardiologist ...
  • CHOC Walk in the Park: Justin’s Helpers
    As it celebrates its 25th anniversary, CHOC “Walk in the Park” has raised more than $24 million to fund education, research and adoption and utilization of the latest technologies to ...
  • A Bright Future: Ian and Micah’s Story
    Even though I’ve been hanging around CHOC Children’s for a long time now, I am continually surprised by the courage, tenacity and strength of the patients I meet. It’s especially ...