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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Finding Someone Who “Gets It”

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

The hardest part about having cancer as a young adult is finding someone who “gets it.” Someone who knows intimately what you are going through, someone who can relate to your struggles from their own personal experience. As much as I appreciate that my family and friends are there for me, and as much as they empathize with me, their level of support is limited to being on the sidelines, but not entirely knowing what I’m going through. Kara, one of CHOC’s child life specialists in the adolescent and young adult (AYA) treatment program, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need. Even though I had a great team of family and friends, plus everyone at CHOC who cheered me on, it was important for me to find someone who had been through the same diagnosis at the same time in their life.

When I was first diagnosed, my best friend’s mom put me in touch with a family friend of theirs, who is also college-aged and had Stage 2 Hodgkin’s. She was almost finished with her last round of chemo just as I was starting my chemo.  I cannot even express in words how helpful it has been having her there to answer questions for me and calm my fears about certain procedures or just the whole experience in general. One moment where I appreciated her support was right before one of my surgeries. I already had a PICC line (a peripherally inserted central catheter, used for long-term medications and for blood draws), but my doctors wanted to remove it and add a port. A port is a device they would insert under my skin and attach to a vein that allows medications, blood products, and nutrients to be given intravenously. I had some anxiety about the surgery and having to get poked often with the port, rather than just attaching an IV to my PICC. She reassured me that the port was more convenient and worth the extra procedure and that definitely helped me feel more comfortable going into surgery.

Although she lives across the country on the east coast, she was always only a text away for me. She was the first person I texted when I shaved my head―I needed to know how long it took to get used to the new look! And, like me, she was also treated in a pediatric hospital, so we shared a lot of the same experiences as a young adult being treated at a children’s hospital. Even now, when I’m close to being done with my own treatment and she’s a few months out from hers, seeing her back at school, healthy and back to normal, makes me so much more excited for when I get to return to school next semester.

The most important thing for me was to find people to connect with, and that’s something that I would suggest to any cancer patient. With social media being so prevalent nowadays, it is so easy to find other people out there who are going through the exact same thing you are. I joined a Facebook group of other people who have fought or are fighting Hodgkin’s, and it has been immensely helpful. Being able to unload concerns, fears, and frustrations onto a large community and have people respond with intimate understanding of your situation is very cathartic. There is a growing number of resources for young adult cancer patients that can be found online, such as Stupid Cancer, and being a part of these communities has given me a sense of belonging when I felt like I had no else to talk to.

Something that I’ve learned over the past six months is that attitude is equal to effort, and it has certainly made me feel better to make an effort to connect with others and find resources to help me through my treatment.

Learn more about AYA at CHOC

Read more from Brianna:

 

The Five Stages of Dealing with a Cancer Diagnosis

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes Kids Health readers along on her look back at her journey with cancer.

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Bri Miller, a 22-year-old CHOC Children’s patient, takes readers through the five stages of a cancer diagnosis.

Hi, my name is Brianna Miller, known to my friends and family as Bri! I am a 22-year old patient at the Hyundai Cancer Institute at CHOC Children’s, being treated for Hodgkin’s Lymphoma. A month before my 21st birthday, and just before my senior year of college, I was diagnosed with cancer. To say that learning I had cancer was a shock is an understatement. Throughout the last few months of treatment I’ve had a lot of time for contemplation and for trying to make sense of my emotions concerning my journey with cancer.

You’ve probably heard about the five stages of grief, which are typically applied to people experiencing the loss of a loved one, but I found these stages to be therapeutic in learning about and coping with my diagnosis. When you are diagnosed with cancer as a young adult, you are most likely experiencing one of the biggest losses of your life to date.

State 1: Denial

As a full-time college student working two jobs and being involved in a sorority, I was very busy and frankly not worried about much other than my grades, my friends and showing up to work on time. I had no symptoms other than swollen lymph nodes in my neck, and honestly, you don’t often hear about the young adult side of cancer all that much. It took four months of testing and multiple biopsies to assign a diagnosis, but I don’t think I ever really took seriously the possibility of cancer. Seeing as how I had no painful or otherwise debilitating symptoms, finding out what was wrong with my body was pushed to the back of my mind in favor of more present issues, such as my classes, work and social life. When I was finally diagnosed, my reaction was subdued because it almost felt as if I’d known in the back of my mind for a while and had been denying the reality because I didn’t want this disruption in my life.

Stage 2: Anger

Once the reality of my diagnosis set in, a sense of anger also set in. The hardest part about being diagnosed with cancer is that there is really no one to be angry at. The cause of Hodgkin’s is still unknown, so I couldn’t be mad at myself or at anything for causing it. I carried a lot of anger with me for quite a few weeks, and this anger hasn’t quite subsided. It rises to the surface occasionally when I am having a particularly bad day, when I receive bad news about scans, or sometimes just randomly when I am lying in bed trying to fall asleep. Quite often, this anger stems from the question of “why me?” Sometimes I think this anger could be relieved if there was a definitive cause of this cancer, so that it could take away the sense of unfairness that I feel.

Stage 3: Bargaining

The bargaining stage is associated with “If only…” statements and imagining how different things might be if only you personally had done something differently. I have reflected quite a few times on my lengthy process to diagnosis. Five months passed from when my enlarged lymph nodes first popped up to the beginning of my treatment, at which point the tumor in my chest had grown to 9.3 cm. At my halfway scans, there was unexpectedly still active cancer cells in my chest, resulting in more cycles of chemo being added to my treatment plan. I sometimes wonder if things would be different if I had been diagnosed earlier. If my tumor had been smaller at the beginning of treatment, would I have responded better to my chemo? If I had been diagnosed earlier, would I have been able to start treatment earlier and been able to return to school on time, rather than having to withdraw for a semester? Of course, there’s no point in lingering on these thoughts, but these are some unanswerable questions that I can’t help but think about occasionally, and I’m sure apply to many other cancer patients.

Stage 4: Sadness and depression

When addressing this stage, it is important to distinguish between sadness and depression. Depression is pervasive and interferes with everyday activities, and recovery can require professional help. Personally, I felt a deep, deep sadness but it never crossed the threshold into depression. It’s normal to be deeply sad about a cancer diagnosis, especially as a young adult. If I start to count the number of things that I will be missing out on during my six months of treatment, I’ll definitely run out of fingers and be broken down in tears by the end of it. For me, the hardest thing to cope with is that I had to move home to California for treatment, leaving my college time that was filled with a lot of family members, most all of my friends, and my sense of home. It’s hard not to be sad when your life and everything you know is 1,500 miles away, and just like that you’ve lost all sense of normalcy. Going through treatment for cancer doesn’t help either, as it’s hard to be cheerful while being nauseous, fatigued, and in pain from any number of side effects. The most that I can do is look for something positive in everything, and know that at the end of these six months this will all be a memory. Something that has really helped me during this time and while experiencing these feelings is keeping in touch with all of my friends, even while so far away. Knowing that they are all just a quick call or Facetime away has been so reassuring. Kara, one of CHOC’s child life specialists, has been so uplifting every time she’s visited and talked to me too, reassuring me that this is all temporary and offering me all of the resources I might need.

Stage 5: Acceptance

Acceptance by no means is defined by letting go of or losing any of the normal emotions that come with a cancer diagnosis. Acceptance, for me, simply means that you have made peace with your diagnosis and are ready to put all your energy towards fighting the disease. There came a point where I realized that constantly being angry and sad was doing nothing but making me more upset. I realized that in order to beat cancer I was going to need to be strong and accept this as my new (temporary) normal. This doesn’t mean I no longer experience those feelings of sadness, anger, and confusion, but they have become temporary moments rather than a persistent mood.

Everyone’s journey with cancer is different. Even if you are diagnosed with the same type of cancer as someone you know, your emotions, questions and concerns may be completely different, and that’s ok. Having cancer is a deeply personal experience, but that doesn’t mean you have to fight it alone. Talk to your parents, siblings, friends, doctors and nurses― they are all there to help and support you in any way they can. No matter what emotions a cancer diagnosis brings you, don’t feel alone.

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

Read more from Bri:

  • Finding Someone Who “Gets It”
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • Finding Humor in Cancer
    Bri is a 22-year-old who was diagnosed with Stage 2 Hodgkin lymphoma shortly before her 21st birthday. In this five-part series, she takes readers along on her look back at ...
  • What it’s Like to be Treated at a Children’s Hospital as a Young Adult
    Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this ...

 

Finding Humor in Cancer

Brianna Miller is a 22-year-old from Southern California who was diagnosed with Stage 2 Hodgkin’s lymphoma shortly before her 21st birthday. She is a patient at CHOC Children’s. In this five-part series, she takes readers along on her look back at her journey with cancer.

If there’s one thing I’ve come to know more intimately over the last year than I did before, is that cancer makes people uncomfortable. I completely understand. It can be hard to know the right things to say, the best way to react to bad news, and how best be supportive. Along with all the bad things that accompany cancer, however, there are a lot of things that happen and you can’t help but laugh. I want people to know that it’s completely okay to find humor in cancer!

When I was first coming to grips with the impending side effects of chemo, I found that an effective way to ease my anxiety was making jokes to help make light of my situation. I’ve always been easygoing, and this developed into a sense of humor during treatment. If we’re being honest, going from having long hair to being completely bald is shocking but also can be funny! I kept hair ties on my wrist even after I had no hair and would reach for the brush just out of habit. I would often make jokes about being bald, and my friends would always redirect and reassure me that my hair would grow back. Of course, I knew that my hair would grow back, but that didn’t mean that I couldn’t have a little joke at my own expense in the meantime! Now that my hair has started to grow back, it looks kind of funky- I like to call it my “baby Orangutan” look. I know it looks funny, so someone reassuring me that it doesn’t really just makes me internally cringe. I understand the impulse to make someone feel better, but if I’m lucky, I’ll only have to do this whole cancer thing once in my life- might as well make it interesting while I do!

Of course, it’s never okay to make fun of a cancer patient’s trials or downplay their experience, but to consistently only talk to a patient about their experience in a serious tone can be quite frankly boring and frustrating. I’ve found so many great, sarcastic memes and apparel from other members in a Hodgkin lymphoma support group on Facebook and through other groups like Stupid Cancer, and they never fail to bring a smile to my face. My personal favorite was my Halloween costume last year, Charlie Brown. I figured I might as well take advantage of the baldness while I had it!

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I think it’s important for people to realize that if a cancer patient is making light of their situation or making jokes, it’s perfectly okay for them to join in too! Sometimes long hospital stays or hard chemo days can be bleak and tiring, and bringing humor into the situation can help immensely. You have to do what is best for you.

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

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How a Bone Marrow Transplant Can Save Someone’s Life

Every three minutes, someone is diagnosed with a blood cancer, like leukemia or lymphoma. As many as seventy percent of these patients don’t have a compatible match in their family, and must hope to find an unrelated donor. You can help these patients increase their odds by joining the Be The Match Registry®, an international registry of potential matches for those seeking a bone marrow transplant. Today, meet two CHOC Children’s patients who have benefited from a bone marrow transplant.

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Emma, age 23

In the summer of 2017, I went from being a healthy 21-year-old college athlete to an acute myeloid leukemia patient in less than a week’s time. To say it happened fast is an understatement. The doctors told me I needed a bone marrow transplant as soon as possible. Dozens of my family members got tested to be a donor, but because it needed to happen quickly, we used my dad. I received his stem cells on October 3, 2017. The procedure was difficult, but my medical team and the hospital staff were incredible. The oncology floor was like a huge family made up of patients, caretakers, survivors, supporters, and many others who had been touched by cancer. Thankfully, my husband was there every step of the way. By March 2018, I was able to move back to my hometown and resume college online. I was able to reclaim my life and feel hope for my future. Right now, I’m three weeks away from the one-year mark. I feel good, and I’m so grateful for my bone marrow transplant. It gave me back my life and the best gift of all: time.

Zaiden-bone-marrow-transplant

Zaiden, age 3

I was diagnosed with B-cell acute lymphoblastic leukemia when I was 2 years old. Thankfully my parents took me to an amazing hospital, CHOC Children’s. Everyone is amazing there! I started heavy chemotherapy, and everything was going well. Unfortunately, I relapsed after nine months of treatment. It was after this I had my first bone marrow transplant, with my dad as my donor. Again, I was kind of back to my normal life when I relapsed again at the six-month mark. After this we tried Car T Cell therapy, but I again relapsed after nine months. So, in April 2018 I had my second bone marrow transplant and this time it was my sister who got to be my donor. These treatments were not easy, but I have been living my best life since then.

I am extremely lucky that I was able to be matched not once but twice with people in my family as my donors. A lot of kids are not as lucky and have to wait a long time to find a match. Because of my treatments it inspired my parents to register with Be the Match in hopes they could do the same thing for someone else that saved my life.