A day in the life of a child life specialist

The Cherese Mari Laulhere Child Life Department at CHOC Children’s strives to normalize the hospital environment for patients and families. “Normalizing” the hospital experience means making things like medical equipment and procedures feel less strange or foreign. By doing this, patients and families can feel more at ease while at the hospital and will be able to focus on what is most important: feeling better.

But just because we’re a children’s hospital, doesn’t mean we only treat little kids. CHOC child life specialists work with teen and young adult patients, too. Follow along for a day in the life of Karlie, an oncology child life specialist.

6:00 a.m. – My alarm goes off and I quickly push snooze. I lay in bed for a bit longer as I am still trying to master the art of getting out of bed as soon as the alarm tells me to. After a few more moments of relaxing I get up, ready to take on the day. I get ready, make some breakfast, pack my lunch and my workout clothes, and head out the door by 7 a.m. to get to work on time.

8:00 a.m. – After making it through infamous Southern California traffic, I arrive at work. During my drive, I usually listen to some sort of motivational worship talk or devotional and once I park, I say a quick prayer to help me be ready for the day. I walk into my office and greet my fellow child life specialists. The office is full of smiling faces, and despite the early hour, it’s already bustling with colleagues talking about various patients and their needs. I work on the hematology/oncology unit, but we have child life specialists embedded in practically every unit and area of the hospital. Our team is filled with energetic, gracious and positive people trying to provide the best support possible to the patients and families that we serve. I feel so grateful and able to take on the day with them by my side.

8:15 a.m. – To start the day, I get a copy of the patient census—an overview of the current patients admitted to the hem/onc unit. I also check the surgery schedule to know what surgeries or procedures my patients have that day.

8:30 a.m. – I head to a meeting with the oncology multidisciplinary team which consists of the medical and psychosocial team. We discuss various patients and their plans of care. We also discuss what psychosocial needs have already been met and what support they still need. We make sure to communicate with each other so that as a team we can ensure we’re meeting our patient’s physical, emotional, spiritual and mental health needs.

10:00 am – I head up to the hem/onc unit and check in with the bedside nurses, so I know what the plan for the day is for each of the patients that are on the unit. We discuss how we can work together to best help each patient. I talk to one nurse about a 17-year-old patient that was just admitted last night with a new diagnosis of leukemia. She tells me that he is feeling nervous about a procedure he’s scheduled for later that day. We go over my plan to support him and I tell her I will keep checking in and keep her updated with how the patient is feeling. I then go into his room and introduce myself and tell his family more about what child life has to offer in terms of “normalizing” the hospital environment. We also talk about what he likes to do, his favorite sports teams and who makes up his family. After we have built some rapport and trust, we talk about his upcoming procedure and I explain it in a way he’ll understand, and it helps ease his anxieties. We talk about why the doctors want him to get some tests done and what these tests will tell the doctors. We talk about the roles of each staff member he will meet, and how they will help him. We set up a hospital tour for later that day. In the meantime, I call my volunteers to drop off a soccer Xbox video game for him to play in his room while he waits.

10:30 a.m. – I get a call to come and help one of my long-time patients with her port access. A port is a medical device surgically placed under the skin in the chest that can be accessed with a needle for infusions and lab draws. When she was first admitted, we worked on coping techniques including medical play, and now she doesn’t get as anxious for procedures. She’s been in treatment for six months, but she still prefers me to be there, and I enjoy seeing her and being there for her. We play her favorite iPad game together while the nurse does the procedure. During the procedure I remind her of each step of the process as it comes, to help her feel empowered and ready. During the needle poke, we do deep breathing exercises together to breathe away any pain or discomfort, and she squeezes my hand. As soon as the poke is done we go back to playing on the iPad and laughing at inside jokes we’ve developed over the last few months. I applaud her for how well she has been doing with her port needle accesses and tell her how proud I am of her.

11:00 a.m. – I take the time to check in on some more patients that I know, and make sure they have everything they need for the day, including some fun activities to look forward to. A few of my longtime patients are in the middle of long hospital stays, so I come up with a plan for something fun and different for them to do that day to help make the most of every day they are there.

11:30 a.m. – I check in on my new 17-year-old patient and find that he is ready for his tour. We start by walking around the hem/onc unit and I show him the gym and the teen room. He loves air hockey, so I show him the air hockey table in the playroom as well.  On our tour, we cross paths with a pet therapy dog, so we stop to spend some time with him, and we all laugh as the dog does one of his famous tricks that he has practiced for a doggy treat. We then head down to the second-floor lobby to check out the amenities it has to offer. We check out Seacrest Studios (our in-house radio station), the movie theater, another teen room, Turtle Talk, and two outdoor patios. Child life organizes a lot of special events for patients, and today we are hosting several baseball players from the Angels. We stop by that event while we’re on the second floor and check out the games going on, crafts, giveaways and my patient snags a few photos with his favorite players before I escort him and his family back up to their room.

12:00 p.m. – I take time for a quick lunch break with my fellow child life specialists. I work with some of the kindest, strongest, most giving and selfless people that I know. We enjoy some great conversation about work and about our lives outside of work. My coworkers are my greatest support on the job and I feel grateful to be able to work alongside them and the other wonderful staff at CHOC. I am thankful every day for the wonderful coworkers I have that are also some of my closest friends!

1:00 p.m. – I head back up to the 5th floor to take part in one of the best parts of my job. Today we’re celebrating the final chemotherapy treatment of a 22-year-old patient. I have a trophy and a sign that reads “Happy Last Chemo!” I gather the nurses, clinical assistants, nurse practitioners, and any other available staff to join in. We parade into the patient’s room cheering, and sing the “Happy Last Chemo” song to the tune of “Happy Birthday.” As I look around the room, I see that the patient, her family, and all the staff have tears of joy in their eyes. We are so happy for this patient reaching the end of her treatment. This is definitely something worth celebrating.

2:00 p.m. – I get a call from the front desk that some special visitors are waiting for me. I know it is the surprise we have in place for another patient. This patient, a 13-year-old girl, has been in the hospital for a while and I know she could definitely use an emotional boost. Today is her golden birthday, which is the perfect time for a big surprise.  I reached out to a local jewelry store and asked for their help. They agreed to bring some cute gold jewelry items for this patient to help celebrate her golden birthday. I feel so grateful for our community partners that are so generous and willing to help our patients. Seeing my patient’s face light up warms my heart. She knows that she was thought of individually and that people wanted to make her day brighter.  I am so grateful to be able to help provide these special and meaningful experiences to a patient like her that is so kind, strong, and such an example of perseverance.

2:30 p.m. – I return to the room of my 17-year-old patient and take him down to the pre-operative unit for his scheduled procedure. We talk about new questions and concerns that he has thought of since this morning, but we also talk about the things in his life that are important to him; his friends, family, sports, school, and fast food. When it’s go-time, I stay with him as his parents go wait in the lobby. Before he receives anesthesia, I stay with him as we listen to his favorite artist and talk about what songs he likes. I’m a terrible singer, but we sing together to take his mind off the procedure. We continue doing this while the wonderful team of nurses, technicians, physicians and anesthesiologists get everything ready. The patient and I continue to talk, and I interject every once in a while, to let him know what the procedure staff is doing as we go along. It is time for him to receive his anesthesia and I talk with him until he falls asleep. Afterwards I thank the procedure room staff and doctors for all that they do and I exit the room for the procedure to begin.

3:00 p.m. – Afterwards I head back up to the hem/onc unit for a planning meeting for our biggest event of the year. Each year, the CHOC Children’s Oncology Ball presented by The J. Willard and Alice S. Marriott Foundation is a chance for oncology patients and their friends to celebrate their life and all they’ve been through. This event is part of the Adolescent and Young Adult (AYA) treatment program. Our team spends months planning this event so that every patient, no matter their age, can feel like Prom King or Queen for the day.

4:00 p.m. – After that brainstorm meeting, I check in on the family of a newly diagnosed 2-year-old boy. As I enter the room I see that the patient is napping but that his big sisters have come to visit. I talk with the siblings and educate them about what they see in the room and help them understand their younger brother’s diagnosis through a medical play activity. I help them understanding what the nurses and doctors are doing to help him get better. We talk about how they are feeling and concerns and fears that they have. One sister thinks this diagnosis happened because she once got really mad at her brother for taking her toy. I assure her that her brother’s cancer is nobody’s fault, and that there is nothing anyone did wrong that made this happen. We talk about how they can help their brother while he is in the hospital. They can play with him, draw him pictures, give him hugs, wash their hands so he doesn’t get germs, and help mom and dad around the house. I want them to know that as siblings they are important too, and I am here to provide support to them as well. I remind them that every fun thing in the hospital is for them too! With their parents’ permission, I take them down to Seacrest Studios to hang out with the staff there. Seacrest Studios music and programming is broadcast to every patient’s room, and the girls get to help host the daily game of Bingo. To see them feel special and get the attention they need warms my heart. Illness really does affect the whole family and taking the time to acknowledge and be there for each family member is so important.

5:00 p.m. – After leaving the siblings in the excellent care of the staff in the Seacrest Studios I head back to my office to gather my things and head home for the day. On my drive, I call my mom who lives in Utah. I talk to my mom about my day as much as I can without breaking patient confidentiality. I enjoy talking to my parents and know they will always give me sound advice. My mom hands the phone over to my youngest brother, who is a senior in high school and we catch up on his day. I love hearing about my siblings’ lives. I am one of ten children!

5:30 p.m. – I arrive at the gym for my workout. Exercise is a great time to decompress from the day and relieve any stress I may be feeling from whatever sad or difficult situation that may have happened that day. I absolutely love my job, but it can be hard to watch these patients and families go through such difficult things― patients feeling sick, losing their hair, hearing that their cancer came back, having to get a poke for blood, and the reality of sometimes losing a patient to cancer, all takes a big toll on our staff. In addition to support from my colleagues, I also try to find things outside of work that help me cope, and working out is one of those things. Today was not one of those really difficult days, but running on the treadmill and doing some weight training definitely helps me decompress and transition out of work.

6:30 p.m. – I head home and make dinner while I talk to my roommates. We talk about our days and then we have friends come over for a fun game night.  It is a great night spent relaxing and connecting with friends.

10:00 p.m. – Time for bed so I can give tomorrow all the energy it needs! I count my blessings, especially being able to spend every workday with the most amazing kids, teens and young adults who are fighting their illnesses with grace, positivity, joy, strength, wisdom and the desire to make the most of every day. I look forward to tomorrow, and the opportunity to offer each patient and family member I come across my best care and support to make their day even a little bit brighter.

Learn more about CHOC's child life services

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Olivia’s Journey with Music Therapy

Olivia was unexpectedly born two months premature and spent the first seven months of her life in the CHOC Children’s neonatal intensive care unit (NICU). During some moments of their extended NICU stay, her parents weren’t sure if they would ever get to take their baby girl home.

From the day she was born, Olivia had been exposed to a high level of stimulation in the hospital setting. Despite the NICU’s environment of healing, the beeping of machines, and steady flow of clinicians in and out of her room had overwhelmed Olivia and made her weary of physical touch.

“Even though the doctors and nurses were very gentle with her, and everything was done with her best interest in mind, it’s a natural outcome for someone who has spent their entire life thus far in a hospital to be apprehensive of physical touch,” says Leilani, Olivia’s mother.

The NICU’s developmental team quickly saw that Olivia would benefit from music therapy, and introduced Olivia’s family to Brie Mattioli, a board-certified music therapist at CHOC who specializes in the NICU setting.

Initial goals of music therapy for Olivia included pain management, learning how to self-soothe, and self-regulation. Once her pain improved, she could show more self-expression and even develop preferences for certain types of music. (Her favorite song is “Rise Up” by Andra Day.)

Sometimes Brie’s goal was to help Olivia get to sleep, which is healing. During other sessions, their goals were focused on development and stimulation.

The calming effects of music therapy was just what Olivia needed.

Afterall, she underwent her first in a series of surgeries when she was just 2 weeks old. During prenatal scans, doctors discovered that Olivia had enlarged kidneys, and at birth they discovered her stomach was enlarged as well. Surgery was a priority. Under the care of Dr. Peter Yu, pediatric general and thoracic surgeon, Olivia’s intestines were repaired. Another surgery, when Olivia was 2 months old, shortened her lengthy spinal cord.

Olivia also showed traits of Noonan Syndrome ― a rare genetic disorder that affects one in 1,000 to one in 2,500 people. Noonan Syndrome is commonly associated with physical characteristics like atypical facial characteristics and a short stature, and clinical symptoms like heart defects, bleeding problems, feeding issues, developmental delays and malformations of bones in the rib cage.  Although Olivia seemed to exhibit mild physical characteristics of the syndrome, she displayed prominent clinical symptoms.

While she underwent genetic testing for Noonan Syndrome, Olivia’s care team also indicated that she was a candidate for genomic sequencing, the process for determining someone’s complete DNA sequence. Through a partnership with Rady Children’s Hospital, some critically ill infants and children in CHOC’s intensive care units have access to rapid whole genome sequencing. The research collaborative intends to decrease the time between an acute diagnosis and the implementation of effective treatment for difficult-to-diagnose cases. Olivia was genetically tested as were her parents. Two weeks later, the results came in. Neither parent tested positive for Noonan Syndrome, but Olivia did. Since neither parent was a carrier, this meant that Olivia had a uniquely altered gene that resulted in the syndrome.

“When the results came back, we were in disbelief and grieving,” Leilani recalls. “The news was unexpected and heartbreaking. We had never heard of Noonan Syndrome and we had done most of the genetic testing offered during my pregnancy. Our baby was so innocent, and she didn’t ask for any of this. I found myself fast-forwarding to the future and wondered what life would look like for her.”

Music as a journey to healing

While in the hospital, Olivia saw Brie four times a week for music therapy. The more music therapy sessions Olivia had, the more relaxed she became in a sometimes-stressful hospital environment.

“When bodies are relaxed, they heal better,” Brie says. “More opportunities for relaxation mean more opportunities for healing, positive gains and progress.”

In addition to helping patients make progress towards clinical goals, music therapy can provide a sense of normalcy to families in the midst of an emotional time.

“Music promotes a sense of positivity and peace in the room,” Brie says. “It wasn’t the nursery they planned to bring their baby home to, but it provides a sense of normalcy to families.”

The practice resonated with Leilani, who had even considered pursuing a career in music therapy in college. While pregnant with Olivia, she would frequently play music, everything from Ed Sheeran to N*SYNC for her daughter.

“My pregnancy was difficult, and music had always been a form of therapy to me,” Leilani says.

When Olivia was discharged from the NICU, her parents were given a CD specially recorded by Brie with Olivia’s favorite music therapy songs so she could continue healing at home.

“No parent signs up to be in the hospital for all those months,” Leilani recalls. “But I am so happy that CHOC was there when we needed them. CHOC was the right place for Olivia.”

Learn more about music therapy at CHOC

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What We’re Thankful for this Year: 2017

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

Related posts:

  • A day in the life of a child life specialist
    The Cherese Mari Laulhere Child Life Department at CHOC Children’s strives to normalize the hospital environment for patients and families. Follow along for a day in the life of Karlie, ...
  • Olivia’s Journey with Music Therapy
    Olivia was unexpectedly born two months premature and spent the first seven months of her life in the CHOC Children’s neonatal intensive care unit (NICU). The more music therapy sessions ...
  • What We’re Thankful for this Year: 2017
    In celebration of Thanksgiving, members of the CHOC Children’s pediatric health care system express what they’re most grateful for this year.

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.

childhood cancer
“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.

childhood cancer
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!

childhood cancer
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.

childhood cancer
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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