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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What is a Clinical Trial?

Children with life-threatening conditions are often candidates for clinical trials. If your child has a serious illness, your doctor might talk to you about enrolling your child in a clinical trial.

Carefully conducted clinical trials are performed in human participants to provide answers to questions such as:

  • Does a treatment work?
  • Does it work better than the standard existing therapy?
  • Does it have side effects?

“Through clinical trials, doctors find new ways to improve treatments and the quality of life for people with disease. They also give children with rare or difficult-to-treat conditions, such as certain forms of cancer, access to innovative treatments,” says Dr. Van Huynh, a pediatric oncologist at the Hyundai Cancer Institute at CHOC Children’s, and the CHOC principal investigator for the Therapeutic Advances in Childhood Leukemia/Lymphoma Consortium, a group of children’s hospitals and universities that work to quickly develop and carry out clinical trials. The consortium develops phase I and phase II clinical trials of new therapies and novel therapy combinations in recurrent childhood leukemia and lymphoma.

dr-van-huynh-choc-childrens-pediatric-oncologist
Dr. Van Huynh, a pediatric oncologist at CHOC Children’s.

Clinical trials are standard practice in cancer treatment for children, adolescents and young adults. In fact, a higher percentage of newly diagnosed children with cancer and their families participate in clinical trials, perhaps more than in any other field of medicine, according to Dr. Huyhn. All clinical trials are voluntary and information collected is confidential. Participants can withdraw from a trial at any time, for any reason.

“Some clinical trials evaluate how well new medications work and whether they are safe to use. Other clinical trials explore whether we can use medications in new combinations or at different doses to improve survival or reduce short-term side effects,” says Winnie Stockton, investigational pharmacist at CHOC Children’s. “There are trials that focus on finding the best ways to minimize long-term side effects of certain treatments, and other trials that aim to determine the best dose to give children for medications that have successfully treated cancer in adults.”

winnie-stockton-choc-childrens-investigational-pharmacist
Winnie Stockton, an investigational pharmacist at CHOC Children’s

Types of Clinical Trials

Clinical trials are categorized as Phase I to IV trials.

Phase I

Studies of a new drug are the first that involve people. Participants in these trials are usually the first to receive the new therapy. The drug is tested to evaluate the dosages of the treatment and how often the treatment can be administered. Drugs are given at gradually increasing dosages, and participants are monitored closely for side effects. The goal of a Phase I clinical trial is to find the dose that is best tolerated without causing severe side effects.

Phase II

Once a treatment is found to be safe in a Phase I clinical trial, it is then tested in a Phase II trial to determine if it works. The treatment targets the patients who responded most favorably in Phase I trials. In these trials, doctors may evaluate if the treatment works for a specific type of cancer or illness.

Phase III

Once a new therapy has been determined to be safe and effective, it is then moved to a Phase III clinical trial. These are the studies that most children with newly diagnosed illnesses or cancers will receive. These trials test whether the new therapy is better than the standard treatment.

Phase IV (also known as Post-Marketing Surveillance Trials)

Phase IV studies take place after the drug has received regulatory approval (market authorization) and are designed to provide broader effectiveness and safety information about the new medicine in large numbers of patients, and to compare or combine it with other available treatments. These studies are designed to evaluate the long-term effects of the drug.

When you take part in a clinical trial, you will only be in that one phase of the study. Treatments move through the phases, but patients do not.

“At CHOC, we believe it’s important to conduct research directly with children and adolescents in a facility that is devoted exclusively to the care, quality of life, rights and safety of children of all ages. If a parent is interested in having their child participate in a clinical trial, we currently have over 350 research studies in more than 30 specialties to provide children with the latest treatments,” says Dr. Huynh.

Learn more about research at CHOC

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Looking beyond traditional medicine

Guest blogger, Audra Wilford, proud mom of CHOC Children’s patient, “SuperMax,” and founder of MaxLove Project – a community organization dedicated to helping childhood cancer families beat the odds – shares how her son has benefitted from CHOC’s integrative health services.

Max with Ruth McCarty, director of CHOC's Integrative Medicine Program
Max Wilford with Ruth McCarty, L.Ac.

A few years ago, our son Max was diagnosed with brain cancer. After a difficult brain surgery, where only a portion of the tumor could be removed, and almost a month in the hospital, we faced the biggest challenges of our lives. After the surgery, Max lost his ability to walk, talk and use the left side of his body. He was going to need an unknown amount of chemotherapy and radiation to try to shrink the tumor left in his brain. We knew we were going to need an all-hands-on-deck approach for fighting the cancer and for restoring Max to health.

What we didn’t realize at the time was how many hands we’d need – it takes a whole multi-disciplinary team. But what happens when we leave the hospital? Who helps with nagging side effects, lingering stress, optimal nutrition, strengthening exercises and healthy sleep?

For us, it started with one amazing CHOC practitioner: Ruth McCarty. Ruth is the country’s only traditional Chinese medicine specialist at a children’s hospital who is fully integrated into every medical team in the hospital. When we first met with her, she put us at ease immediately. As we told her about Max’s neuropathy, sleep problems, headaches, gut challenges, anxiety, balance problems, muscle pain, immune suppression, and so on, she smiled and told us not only what she could do with acupuncture and moxibustion – a Chinese medicine technique that involves the burning of mugwort, a small spongy herb, to facilitate healing – but also what we could do at home through massage and select supplementation.

Over the next few months we saw Ruth every week, twice per week during chemotherapy. Max’s strength, range of movement, mood, pain, gut challenges, headaches, and sleep improved every week. And on the rare week when we had to miss appointments with Ruth, we would notice symptoms returning.  During this time we also got to know Dr. Agnes Horvath, a CHOC oncologist who made the rounds in the outpatient infusion center. Dr. Horvath introduced us to bone broth and other healing foods that helped Max thrive through treatment. She encouraged us to think about nutrition as a key component of Max’s treatment. With her help, we continued to transform Max’s diet into what we came to call “fierce foods”: lots of whole foods, limited sugar and processed foods, and a ton of flavor. Max finished treatment in January 2013 and finished up kindergarten just a few months later.

By June 2013, Max’s tumor began growing again. By then, we had become immersed in the latest research on nutrition and cancer, and we wanted to try an intensive therapeutic diet for Max alongside whatever conventional therapies that our oncologist, Dr. Violet Shen, recommended. Dr. Shen took the time to research the diet and gave us her full support. She carefully guided us as we incorporated a therapeutic diet into Max’s treatment protocol.

Today, Max’s tumor continues to shrink and he’s a healthy, happy third grader. Each step of the way, CHOC has supported our family in incorporating the best and latest evidence-based medicine, whether it’s in acupuncture, massage therapy, stress control or diet. The doctors, nurses and therapists at CHOC understand that complementary and integrative medicine is about optimum quality of life, using the best of all therapeutic approaches to support each child and family to thrive in the face of tough odds.

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Innovative Cancer Treatment: Abbey’s Story

Abbey and Jaime Serna, phlebotomist at CHOC Children's hospital.
Abbey Schemmer and Jaime Serna, phlebotomist at CHOC Children’s Hospital.

While many teenaged girls might balk at wearing a medical device on their shaved heads 18 hours a day, Abbey Schemmer didn’t blink an eye.

After all, the 16-year-old CHOC Children’s patient was fighting for her life.

Following the diagnosis of two brain tumors – including a rare, extremely aggressive type called glioblastoma multiforme – and several surgeries, Abbey and her family turned to a new technique to halt the tumors’ growth: tumor treating fields, or TTF.

TTF uses electromagnetic forces to prevent this type of tumor from dividing and growing. TTF was only recently approved for adult use, and as a pediatric patient, Abbey received special clearance to use ahelmet-like device that administers the treatment.

Worn continuously for 18 hours a day, the helmet places electrodes directly on Abbey’s scalp, which requires her to shave her head every few days so that the helmet’s electrodes directly touch her skin. Abbey wears the device’s power source in a backpack.

“This is not an easy treatment,” said Dr. Violet Shen, Abbey’s oncologist at CHOC. “But she was willing to do that and is wearing her helmet and head dressings and still going on with her life.”

Following about nine months of TTF treatment and chemotherapy, Abbey’s tumor shows no signs of major progression, Dr. Shen said.

The progress is a marked departure from expectations when Abbey was diagnosed in early 2013 following complaints of nausea, headaches and lethargy.

“We thought we had a sick little girl,” said Ken, Abbey’s father. “We were thinking she wouldn’t live for very long.”

Abbey immediately underwent surgery to remove the tumor, followed by chemotherapy and radiation. She stayed in good spirits and continued with school, but after she experienced seizures in summer 2014, it was clear the glioblastoma had grown back.

After another surgery to remove Abbey’s right frontal lobe, the family explored other methods to curb the tumor’s growth, and ultimately turned to TTF.

“It was cool that it could help my cancer,” Abbey said.

In the months following, Abbey has continued in school and she’s looking forward to beginning driver’s education. Her schoolmates have rallied around her, and taken an interest in her unique treatment, Abbey said. “People ask me questions,” she said. “They think it’s fun because my backpack generates heat. They ask, ‘Can I see your heater?’”

If this treatment continues to work, Abbey could feasibly continue to wear the helmet for the rest of her life, Ken says. For now, her family is taking the treatment one day at a time.

“It’s been working,” Dr. Shen said. “Very few people survive with this tumor for six months, let alone a year. Abby’s done well. She’s very vigorous and still attending school. Abbey’s definitely a fighter.”

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, ...
  • What is a Clinical Trial?
    Children with life-threatening conditions are often candidates for clinical trials. If your child has a serious illness, your doctor might talk to you about enrolling your child in a clinical ...
  • Looking beyond traditional medicine
    Guest blogger, Audra Wilford, proud mom of CHOC Children’s patient, “SuperMax,” and founder of MaxLove Project – a community organization dedicated to helping childhood cancer families beat the odds – ...

 

 

Celebrate National Cancer Survivors Day

In honor of National Cancer Survivors Day on June 7, check out this video where patients and staff at the Hyundai Cancer Institute at CHOC Children’s groove to Lady Antebellum’s “Compass” and show how they let their hearts be their compasses.

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  • 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, ...
  • What is a Clinical Trial?
    Children with life-threatening conditions are often candidates for clinical trials. If your child has a serious illness, your doctor might talk to you about enrolling your child in a clinical ...
  • Looking beyond traditional medicine
    Guest blogger, Audra Wilford, proud mom of CHOC Children’s patient, “SuperMax,” and founder of MaxLove Project – a community organization dedicated to helping childhood cancer families beat the odds – ...