What We’re Thankful for this Year

In celebration of Thanksgiving, members of the CHOC Children’s pediatric health care system express what they’re most grateful for this year.

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Chloe Krikac, child life specialist

“I am so grateful to work for an organization that I love, and am truly honored and humbled that I get to walk into these halls every day. I am grateful to the parents of our little ones at CHOC for their trust and for giving us the opportunity to serve them. This year, I am especially thankful for my amazing team of child life specialists. I could not imagine this journey without their loyalty, laughter and unconditional support. Happy Thanksgiving CHOC and thank you for giving me the opportunity to do what I love.” – Chloe Krikac, child life specialist

“I am so very thankful to be a nurse here at CHOC, one of the leaders in children’s healthcare. The hard work, dedication and compassion that I see in the NICU makes me proud to be a part of such a wonderful organization. I am humbled and thankful to the parents and families that allow me to care for their most precious gifts each, and every day.” – Bridgette Glass, RN, neonatal intensive care unit

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Dr. Angela Dangvu, CHOC Children’s pediatrician

“As we at Pediatric & Adult Medicine reach the first anniversary of having joined CHOC Children’s Primary Care Network, I am grateful to be part of a health care system that is dedicated to providing the best care for children. When I came to CHOC Children’s 20 years ago as a resident, I knew it was a special place for patients, their families and the people that worked there. Though the hospital and the services that we are able to provide have expanded beyond what I could have imagined, it remains a special place for children and the people who care for them.” – Dr. Angela Dangvu, CHOC Children’s pediatrician

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Dani Miliken, RN, clinical director of CHOC’s mental health inpatient center

“There are so many things to be thankful for this year! I am incredibly thankful that I was able to become a part of the amazing CHOC Children’s health care system this year. I am thankful to get to work with the extremely dedicated care providers here who have such a passion for helping children and families. I am also immensely thankful for the community involvement in developing the new Mental Health Inpatient Center. With such strong community support and CHOC leadership commitment around the Mental Health initiative I get to be a part of something very special and for that I am truly thankful!” –Dani Miliken, RN, clinical director of CHOC’s mental health inpatient center

“I am so thankful that CHOC Children’s help to provide me the opportunity to earn my BSN this past year. I look forward to applying this knowledge to be able to better care for my patients for many years to come.” –Barbara Mazurek, RN, hematology/oncology unit

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David Dukes- Chair, CHOC Children’s Board of Directors

“I am thankful, honored and humbled to serve as Chairman of the Board of Directors of CHOC Children’s Hospital. Our Board of Directors is passionately committed to see CHOC Children’s continue its rapid ascent as one of the premier children’s hospitals in the United States.  Driven by a highly talented, dedicated and passionate team of doctors, nurses and staff, CHOC provides exceptional and innovative care for every child we serve.” –David Dukes- Chair, CHOC Children’s Board of Directors

chris-larry-laulhere-2“We’re thankful to CHOC for helping to create The Cherese Mari Laulhere Child Life Department. After we met the child life specialists and saw the way they help patients navigate changes in their young lives, and the way patients interact with child life’s specialty services such as pet therapy dogs and Red Nose Docs, we knew this was the perfect gift from Cherese. If she can see what a difference she is making we think she is smiling. We have since become closer with The CHOC Foundation staff and the Child Life Department staff. Our hearts overflow with gratitude and thankfulness every time someone thanks us for Cherese’s gift.” –Chris and Larry Laulhere, who on behalf of The Cherese Mari Laulhere Foundation, generously donated $5 million to CHOC’s child life department

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Brianna Miller

“This year I am thankful for CHOC for so many reasons- this has been one of the hardest years of my life, being diagnosed with and treated for Hodgkin’s Lymphoma. My care team at CHOC has been nothing short of amazing. My oncologist, Dr. Kirov, has done a great job treating my stubborn cancer and working with things often not going the way he expects. My social worker and case coordinator have done everything they possibly can to connect me to scholarships, foundations, etc. so that I can take advantage of all the resources available to me. And I’m especially thankful for Kara and the rest of the child life department for putting on fun events and always brightening my day by coming to visit me!” –Brianna Miller, patient

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Dr. Jessica McMichael, pediatric orthopaedic surgeon

“Working at CHOC has been a dream I didn’t even know I had. I’m unspeakably grateful for my family, our health, and the abundance of opportunity in our lives. I try to remind myself of this every day in little ways…like if there a pile of dirty laundry on the floor that is actually awesome because it means we all have clothes on our backs. I’m grateful for my patients who show me grace, kindness, patience and humor everyday…even when they have their own struggles and frustrations. I’m grateful for the colleagues in my practice for providing me with an opportunity to grow a medical practice and serve the community. I’m also grateful for the heart work and diligence of our orthopedic residents, who I get to teach every day.” –Dr. Jessica McMichael, pediatric orthopaedic surgeon

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Dr. Yigit Guner, pediatric general and thoracic surgeon

“I am thankful for the trust of our patients and families. With the strong support of many highly trained pediatric specialists, our newly-opened all private room neonatal intensive care unit (NICU) is proud to offer, among other services, lifesaving surgeries for premature infants in Orange County.” –Dr. Yigit Guner, pediatric general and thoracic surgeon

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Dr. Kenneth Kwon, a pediatric emergency medicine specialist

“I am grateful to be part of an integrated pediatric and general hospital where child-specific and family-centered care is so greatly emphasized. I am especially thankful to those CHOC staff members working where both children and adults are seen (emergency department, radiology department, and operating rooms), and for making quality care for children in these shared service areas such a high priority.” –Dr. Kenneth Kwon, director of pediatric emergency services at Mission Hospital, and chief of staff at CHOC Children’s at Mission Hospital 

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The Power of Music Therapy: Darlyn’s Story

On a sunny day in the middle of spring, Darlyn was born at St. Joseph Hospital in Orange. She was immediately transferred across the street to the level IV neonatal intensive care unit at CHOC Children’s. As the spring turned to summer, and summer gave way to fall, the NICU remained Darlyn’s home as she battled with a myriad of health challenges.

Before she was born, prenatal ultrasounds showed that Darlyn had a congenital diaphragmatic hernia (CDH), a rare birth defect where a hole in her diaphragm allowed organs from the abdomen to move into the chest. After birth, she was diagnosed with bilateral CDH. Approximately one in every 2,500 babies born are diagnosed with CDH. Of those, only one percent have a bilateral CDH. Darlyn’s parents Mirian and Edgar understood the seriousness of this diagnosis and weren’t sure if their baby would survive the pregnancy, or pass away shortly after birth. In her first week of life, Darlyn underwent her first in a series of surgeries.

“For the first two or three weeks of her life, our main goal was survivorship,” recalls Edgar.

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Darlyn and her father Edgar in the NICU.

Darlyn also has underdeveloped lungs (a condition known as pulmonary hypoplasia), which makes it a struggle to breathe on her own. She lacks a fully formed esophagus, meaning she also can’t swallow or eat on her own either. During Mirian’s pregnancy there was a build-up of amniotic fluid due to Darlyn’s duodenal atresia (a blockage of her small intestine), so the baby was especially active and moved around constantly. The only thing that calmed her down was playing music ― everything from lullabies to classic rock did the trick. Knowing their baby loved music even before she was born, her parents gave her the middle name Melody.

“From day one she has been the melody of our lives,” Mirian says.

Darlyn and her mother in the NICU at CHOC Children's
Darlyn and her mother in the NICU at CHOC Children’s.

Music has continued to play a big role in the now seventh-month-old’s life. Daily music therapy sessions conducted in tandem with occupational therapy sessions have helped her make progress on clinical goals such as developing fine motor skills. Other goals she’s already accomplished include standing for longer periods of time, reaching for and grasping toys tightly, and visual tracking.

A music therapy session conducted in tandem with occupational therapy in the NICU.
A music therapy session conducted in tandem with occupational therapy in the NICU.

“Before starting music therapy, Darlyn wasn’t very active and she often lost oxygen very quickly,” Brie says. “This baby is a new baby since experiencing music therapy.”

Environmental music helps create a soothing space to teach patients to calm themselves in an over-stimulated environment, which can help them heal, even after they go home.

“From the outside, it may look simple, as if I am just serenading a baby in a soothing tone, but I’m working hand in hand with their developmental team to help them reach clinical milestones.”

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A music therapy session conducted in tandem with occupational therapy in the NICU.

Darlyn’s care team is vast. Her medical team at CHOC sees music therapy as a trusted partner in helping Darlyn achieve her clinical goals. Her support system includes: Dr. Irfan Ahmad, a neonatologist; Dr. Peter Yu, a pediatric general and thoracic surgeon; and pediatric specialists from gastroenterology pulmonology, cardiology, infectious disease, the NICU developmental team (made up of occupational, physical and speech therapists), and a dedicated team of NICU nurses.

“We love and appreciate our NICU nurses more than we can even put into words,” Mirian says. “Without them, this journey would be more difficult and more heartbreaking. They take care of Darlyn as if she was their own baby girl.”

Jamie, a NICU nurse, celebrates July 4th with Darlyn.
Jamie, a NICU nurse, celebrates July 4th with Darlyn.

“Music helps calm down infants,” says Dr. Ahmad. “During their fetal life, they are exposed to rhythmic sounds, such as their mother’s heartbeat. They get accustomed to these sounds, and after birth when they hear music with a similar rhythm, they like it. Older neonates become more interactive with rhythmic music, and they look forward to their sessions.”

Darlyn isn’t the only one who has been looking forward to her daily music therapy sessions― her mom does too. After each session, her developmental team calls Mirian to give a full report on her occupational therapy progress and disposition.

Her parent’s high level of engagement is deeply appreciated by her care team.

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Darlyn’s parents chose a Snow White theme for her first Halloween, which she celebrated in CHOC’s NICU.

“Darlyn’s parents are amazing. They ask good questions, and they trust us to take good care of their little girl. It would be hard to tackle this level of complexity without their trust,” says Dr. Yu. “We still have a long road ahead of us, and maybe more challenges too, but they are resilient, just like their daughter.”

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Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

A few months into her time in CHOC’s NICU, Darlyn moved into the brand new 36-room unit with all private rooms. Her family has loved having their own private space.

“In the old unit, it could get noisy and we didn’t feel like we had any privacy. Now, we get to decorate her room and make it feel more like a nursery,” says Mirian.

Darlyn's parents have decorate her private room in the CHOC Children's NICU to feel more like home.
Darlyn’s parents have decorate her private room in the CHOC Children’s NICU to feel more like home.

The family has displayed notes of encouragement from loved ones and her favorite nurses- including nurse Jamie, who taught Darlyn how to stick out her tongue. They’ve even hung up the outfit she’ll wear when she finally gets to go home.

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Darlyn’s parents have hung up the outfit she’ll wear when she finally gets to go home from the NICU.
Learn more about music therapy at CHOC

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Not Fighting Cancer Alone: Sydney’s Story

By Sydney Sigafus, cancer warrior and CHOC Children’s patient

As a teenager and an athlete, my life revolves around sports. As a sophomore at Foothill High School, I’m one of the sports anchors for our school newscast. I’m also a member of the JV girls’ basketball team, which has always been like a second family to me.

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Before fighting cancer, Sydney was a member of her school’s JV girls’ basketball team.

During last year’s summer league season, I started to have pains on the right side of my back. I thought I had simply pulled a muscle, so I told my mom about it. Off we went to the pediatrician, who sent us to get an MRI. We were referred to Dr. Nader Nassif, an orthopedic surgeon who sees patients at CHOC. He saw a spot on my upper femur that was small at the time, but that he wanted to keep an eye on. He said it could be a number of things— one of those being cancer— but he didn’t initially think that that’s what it was because of where the spot was on my bone and what it looked like. He told us to come back in three months for more scans.

By our next appointment, the spot had grown by a few millimeters, so we did a biopsy, which is a test that’s performed to examine tissue or cells from a certain part of the body. That test showed that the spot on my femur was cancerous. Dr. Nassif was surprised, since most teens with Ewing’s sarcoma have it in the knees and it grows very quickly, but mine was near my hip and grew very slowly.

Meeting my care team at CHOC

Dr. Nassif told my family that we were going to be working with Dr. Elyssa Rubin, a pediatric oncologist and director of the bone and soft tissue sarcoma treatment program at CHOC. I learned quickly that Dr. Rubin is not only your doctor but also your friend. She would come into my room and not only ask me how I was feeling, but she wanted to know if I was able to see my friends that weekend, if I had made it to the basketball game at school, or if I had seen the latest movie that just came out. I always felt like she cared about me not just as a patient, but as a person. She laid out the game plan very clearly for me and my parents and answered all the questions we had (and some that we asked over and over again). My treatment plan called for six rounds of chemotherapy before surgery and eight rounds after.

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“I learned quickly that Dr. Rubin is not only your doctor but also your friend,” Sydney says. “I always felt like she cared about me not just as a patient, but as a person.”

I was lucky to have the very best nurses. They were amazing throughout my entire journey. It stinks to have nausea or not be able to do something with my friends because my counts were down, or even be able go to school — but my nurses, especially my nurse practitioners Liz Torok and Jody Pathare, have made something that seems so tough, a lot easier.

Physical therapy has played a big role in my life after surgery. My physical therapist Robin Beauregard is a two-time Olympic medalist, so as an athlete, she helps me connect with my treatment. She’s no-nonsense and very witty like me, and it makes me really look forward to physical therapy sessions.

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Thanks to having an Olympic medal winner on her care team, Sydney was able to look forward to physical therapy sessions.

Another group that has made my journey so great has been the child life team. I can’t say enough good things about them, especially Kara, the child life specialist who works with adolescent and young adult patients. She heard I loved sports, and on day one of treatment, she brought me a huge basket filled with swag from my favorite sports teams and even a basketball hoop for my room. I assumed it was a one-time thing, but she has come to visit me every single time I’ve been at CHOC for treatment. She even came into the operating room with me when I needed an epidural for my surgery because I was scared and my parents couldn’t come into the OR with me. It was hard for my parents to be in the waiting room while I was in the OR, but knowing that I had Kara by my side made them feel so much better. During surgery, my tumor was removed and a prosthesis was put in for my upper femur. After finishing eight more rounds of chemotherapy after surgery, my scans confirmed that I was cancer free!

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During her treatment, Sydney quickly bonded with Kara, the child life specialist who works with adolescent and young adult patients.

Every single person I’ve met at CHOC has been amazing — especially the woman who cleaned my room. She called me princess!

Making the hospital feel like home

Not only has child life supported me on my journey, but they’ve also helped make the hospital feel less like a hospital. This goes beyond bringing an Xbox to your room to take your mind off your treatment. It starts with the way CHOC looks  can you imagine receiving treatment in a place that just had white walls and a white floor? CHOC is the opposite. It’s colorful. It has gardens you can go outside and sit in. There are playrooms everywhere. There’s a lounge that’s just for teens. I’m not musical or artistic, but for the patients that are, they’ll bring you instruments and introduce you to a music therapist, or bring you drawing and painting supplies.

Finding support in unexpected places

When I started this journey, I felt so alone. What are the chances I would know another teenager that is going through this? I soon realized that I did have someone who understood what I was going through, someone that I looked up to even before I was diagnosed with cancer. When I was a freshman, there was a senior at my school who was fighting osteosarcoma (a type of bone cancer) in her knee. Claire was an athlete like me before she was diagnosed with cancer. Our school recognized her as Homecoming Queen during her treatment, and I remember watching her use crutches during the ceremony where she received her crown. At the time, I thought she was so amazing, and I was really moved by her story. Six months later I received my own diagnosis. Claire immediately reached out to me, met me at the hospital and has been offering me nonstop support ever since.

Another pleasant surprise was getting to meet the doctor who delivered me 15 years ago! Dr. Gigi Kroll is a member of the CHOC Children’s Foundation Board of Directors, and I got to meet her at a fundraising event for the Hyundai Cancer Institute at CHOC. My mom had a complicated delivery when I was born, and I’d heard a lot growing up about how wonderful her doctor had been. It was so cool to meet her in person, and nice to know that she’s part of making CHOC the amazing hospital it is today.

Choosing to be positive

I’ve always been a happy and positive person, but I’m also realistic. Of course there’s going to be times on this journey when you’re sad, because who doesn’t get upset about cancer? But I’ve learned that if you’re sad, it’s going to make a bad situation ten times worse.

Even with all the support around you, it’s important to realize that there is only so much other people can do for you. There comes a point where you have to do things for yourself and choose to be positive.

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Red Nose Docs were a welcome distraction and source of positivity during Sydney’s treatment.

I try to be positive all the time. I have a great support system, which includes my family, my friends, my doctors, my nurses and child life.

On the day of my surgery, I set a goal to be able to walk back into school for the start of my junior year. A few weeks ago, I accomplished that goal! I’m starting to think about colleges, and I’m looking to study kinesiology. I want to become a pediatric physical therapist and an athletic trainer.

I’ve learned a lot from this journey. My family and I have been incredibly blessed by my care team and other families who have taken us under their wing, and I want to repay them by doing whatever I can to help motivate other patients who may be struggling to stay positive.

Learn more about the Hyundai Cancer Institute at CHOC Children's

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A Road Map to Surgery at CHOC Children’s

Having surgery at a hospital can be a scary thought for children and parents, alike.  Knowing what to expect can help alleviate fear and anxiety.  The photos below highlight some key aspects of the patient and family journey through the Tidwell Procedure Center at CHOC Children’s Hospital.

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Welcome to CHOC Children’s Hospital – a hospital for children and teens, only. When a child requires surgery, his needs are different than an adult. CHOC has specialized in pediatric surgery since we welcomed our first patient in 1964. Today, our nationally recognized surgeons perform the latest procedures using equipment customized to pediatric patients, from newborns to adolescents.

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After checking in at our first floor lobby, surgical patients and their families are directed to our Tidwell Procedure Center, which includes seven operating rooms, five procedure rooms and two cardiac catheterization labs. The Center boasts leading-edge technology and safety features, as well as a calm, healing environment. Here’s the Center’s bright, colorful lobby, featuring natural light, bubble columns and interesting artwork. There’s also a family room and playroom.

surgery at choc

We want our patients and their siblings to still have the opportunity to act like kids while facing the adult issues of surgery. In addition to a playroom in the lobby, we have an area for play, stocked with books and toys in pre-op. Dedicated child life specialists help normalize the experience by making the environment less strange. Providing distraction and developmentally appropriate education, child life specialists are important members of the surgical team.

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Child life specialists are at the bedside to provide developmentally appropriate education. Patients are able to see pictures of the operating rooms on iPads, which helps to limit stress and anxiety without the use of medication.

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Before heading into the operating room, patients stop at what is affectionately called the “kissing spot.” Here’s where they can say “see you later” to their loved ones before “taking a nap” for surgery.

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Child life specialists escort patients into the operating rooms and to provide distraction and emotional support while pediatric anesthesiologists and other staff members prepare patients for surgery.

surgery at choc

Following surgery, patients recover in our PACU (post anesthesia care unit). As soon as the patient is stabilized, parents/legal guardians are escorted into the area. During this time, patients need as much rest as possible to help their bodies heal and give pain medication time to take effect. The environment is kept calm and quiet. From here, the patient will either be taken to a hospital room, or discharged home.

Our physicians, nurses and staff are dedicated to getting kids better and back to their normal activities as quickly as possible. Patients and families are our partners in this effort; knowing what to expect before, during and after surgery can make a big difference on the experience and recovery. For more information, visit www.choc.org/surgery.

Take a virtual tour of the Tidwell Procedure Center

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Child Life Supports Family on Hospital Journey

Two-year-old Aliyah Islava was fighting what her family thought was a mild stomach virus. When the symptoms did not improve, mom Rosemary took her, at the recommendation of her pediatrician, to the emergency department. Within 24 hours, Aliyah was undergoing brain surgery at CHOC Children’s Hospital.

The diagnosis of stage 4 medulloblastoma, a fast-growing, aggressive brain tumor, shocked Rosemary and her husband Hector and propelled the entire family, including Aliya’s siblings Branden, 10, and Miranda, 5, on a life-changing journey. The family had the support of the entire CHOC care team, which to their surprise included the Cherese Mari Laulhere Child Life Department.

Trained professionals with degrees in child life, child development, human development or recreation therapy, CHOC’s child life specialists strive to normalize the hospital environment for patients and their families. They help make things like medical equipment and procedures feel less strange so that patients and their families feel more at ease in the hospital.

Rosemary recalls with fondness the first time she met Ashley, an oncology child life specialist, shortly after Aliyah was admitted.

“Everything was happening so fast. We were in shock and terrified. Ashley helped explain everything and calmed our fears. She also explained to our other two children what was happening, so we could focus on Aliyah,” says Rosemary.

Aliyah spent almost seven months in the hospital. Child life specialists used distraction techniques and medical play to help her every step of the way. They also helped Branden and Miranda by continuing to explain what was going on with their little sister and giving them opportunities for play.

“Child life helped normalize the entire experience for Aliyah, Branden and Miranda, and made sure they didn’t miss out on just being kids. Even more amazing, they were never afraid, not even Aliyah,” says Rosemary.

A big part of childhood is birthday parties. Aliyah was very ill in the oncology intensive care unit when she was about to turn 3. Rosemary wasn’t sure her daughter would be permitted out of the unit. But as soon as Aliyah got clearance from the doctors for a short visit to the playroom, child life organized an impromptu birthday celebration.

“I will never forget the party that child life planned. In a short amount of time, they managed to make a poster, collect presents and sing to her,” remembers Rosemary.

Following Aliyah’s last chemotherapy treatment, more than a year after her diagnosis, child life specialists sang once again; this time, “Happy Last Chemo.”  They continue to support Aliyah today as she faces additional health challenges. Most recently, a child life specialist accompanied Aliyah into the operating room. Aliyah didn’t even need medication to keep her calm. She was comforted knowing child life was by her side, says Rosemary.

“Their patience, their understanding, their compassion…these are just some of the things that make child life specialists so unique,” she explains. “They bring you hope and step in when we as parents are overcome by worry and fear. I am very thankful for having them as part of our journey.”

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