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

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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!

bri-miller-charlie-brown-halloween

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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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 five-part series, she takes readers along on her look back at her journey with cancer.

Being diagnosed with cancer right before I turned 21, I was pretty surprised when we drove up to CHOC Children’s for an initial meeting with my oncologist. I asked my parents why we were going to a children’s hospital. In my mind, I figure that once you turned 18 and were legally considered an adult that you would have aged out of pediatrics as well. I remember sitting in the waiting room, surrounded mostly by young children, and feeling completely out of place. There were cartoons playing on the TV, tiny chairs in the waiting room and cartoon characters on the walls in the treatment rooms. I hadn’t been to my pediatrician since I left for college, so it all seemed like a flashback to when I was a child, and not like somewhere that someone my age would be treated.

bri-miller-dealing-with-a-cancer-diagnosis
Bri Miller, a 22-year-old CHOC Children’s patient, was surprised when her treatment plan included a children’s hospital.

As unusual as it seemed at first, now that I’m done with treatment I have to admit that I 100 percent would not want to be treated anywhere other than CHOC. The decorations of little cartoon characters in the rooms at the clinic and the Disney movies always playing in the waiting rooms seem so much more bright and welcoming compared to the drab white walls and sterile waiting rooms of the non-pediatric doctors’ offices I’ve visited. During my inpatient stays, there was always something exciting happening in the hospital to encourage me to get out of my bed and take a little walk around. Oncology Prom, festivals in the second-floor lobby, special visitors in Seacrest Studios were all incentives to get out of bed and get moving. The nurses at CHOC would become more than just my caretakers; they became my friends. Since quite a few of them are fairly close to my own age, there was always something that we had in common and something to talk about.

The Adolescent and Young Adult program at CHOC is really such an amazing resource within the child life department. For my first round of chemotherapy, I had to be admitted to the hospital, and that weekend happened to be the same weekend of CHOC Prom, which was such a fun experience. Going to the dress selection and primp events and meeting former patients who are now in remission was so encouraging. Even though I was just beginning my treatment at that time, I could see how they had all gone back to having normal lives and how they’re so positively dealing with the lingering side effects of treatment. It was and still is encouraging to me, knowing that when I return to college, although it will be more challenging than before, I will be able to tackle life the same way that they have.

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After the primp event, Bri models the gown she chose to wear to the 2018 Oncology Prom.

One of my favorite parts of being treated at a children’s hospital is the other patients- the actual children. Although I am a secondary education major, I’ve always appreciated the genuine optimism and happy demeanor that young children possess. Regardless of the trials that these young oncology patients were facing, it always lifted my spirits to see them because more often than not they were toddling through the halls with the biggest smiles on their faces. In the same way that meeting former AYA patients made me excited for life after cancer, the little kids that I met or simply saw during treatment encouraged me to power through treatment. If a two-year-old or a six-year-old can go through treatment with a smile on their face, what excuse do I have to not try and make the best out of what I’ve been given?

bri-care-team-child-life
Brianna shares a group hug with members of her CHOC fan club, including registered nurses and child life specialists.

Receiving my treatment for cancer at a children’s hospital has enabled me to be more positive about the whole experience. Having wonderful doctors, nurses, and an incredible AYA support team has made these past six months easier and much more comforting than I ever could’ve imagined at the beginning.

Learn more about AYA at CHOC

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  • A Visitor’s Guide to the Hematology/Oncology Unit
    Visiting the hospital can be stressful. What should I say? Is it ok if I cry? This guide offers advice to visitors of the hematology/oncology unit.

A Visitor’s Guide to the Hematology/Oncology Unit

Being hospitalized can be scary and stressful, no matter the age of the patient. A visitor can have the same emotions, especially if they are new to a hospital setting. What should I say? Is it ok if I cry? Should I bring them a gift? You will see all sorts of circumstances when you walk into a patient room in the hematology/oncology unit, whether you are visiting your own loved one, or meeting a friend that your loved one has made during treatment at CHOC. The child life specialists of The Cherese Mari Laulhere Child Life Department at CHOC Children’s offer the following advice to visitors coming to the hematology/oncology unit.

visiting a child with cancer

What to say:

Ask what shows they are watching, what’s their favorite movie, what they like to do when they’re at CHOC.

If the patient you are visiting is a classmate or friend and you usually see them regularly, it’s ok to tell them that you’ve missed them. Teen patients especially want to hear about what’s going on at school so they feel like they are still part of it. Sometimes it makes them feel sad that they are missing out on things, but ultimately it makes them feel like they haven’t been forgotten.

Ask the family what they need. You may be surprised by what they say, in some cases. Maybe the thing they need most right now is for you to babysit their other children so they can focus on their hospitalized child. Maybe they feel overwhelmed with gifts, but would appreciate if you went to their house and tidied up and did a load of laundry so they have one less thing to worry about.

Send an e-mail or a text message to let them know you are thinking about them. Patients and families often need space immediately following a diagnosis, but they don’t want to feel forgotten about. Offers to help often come mostly in the early days of treatment, and sometimes drop off after a few months. Let them know you haven’t forgotten about them. Families can feel bad saying no to visitors, so give them the option to say, “not right now.” Here are examples:

  • “I’m here for you and I’m ready to come at any moment. Please know I don’t want to overstep any boundaries, please tell me no if you do not feel up for a visit.”
  • “I’m open to talking about whatever you feel comfortable talking about. I’m here for you and am willing to just listen and be with you in this.”

It’s ok if you don’t know what to say. You may have never been the loved one of someone with cancer before. You can say something like:

  • “I don’t know what to say but I’m with you in this.”
  • “We’re going to do this together.”
  • “I can handle this with you. You shouldn’t have to carry this alone.”

It’s ok to say, “I’m sorry.” It’s ok to cry.

Cancer is often a long and difficult journey. On some days, your friend may feel positive and strong, and on other days they may feel overwhelmed. On these days, tell them, “It’s ok to not be ok.” Give them permission to feel whatever they are feeling. Validate their feelings by saying, for example, “You have every right to be sad and angry. This isn’t fair, but we’ll get through this together.”

visiting a child with cancer

What not to say:

Never assume age or gender, just because of a patient’s size or lack of hair. CHOC treats a variety of ages here, from babies all the way up to young adults.

Don’t ask how long they’ve been here or when they get to go home. They might not know the answer, which can be frustrating.

Avoid asking how school is going. This may only remind them they are missing out on time with friends, and isolated in the hospital.

Although some patients enjoy ordering food delivered straight to their rooms, avoid asking questions about food because some patients have restrictive diets. Others might be nauseous from chemotherapy treatment, and some may not be able to eat regular food that day if they are about to have a procedure.

Visitors can be great motivation for patients to get out of bed. However, don’t assume they can get up and walk around. Instead of asking, “Hey, do you want to go walk to the playroom or catch Turtle Talk?” you can say, “We can take a wheelchair, or if you feel like getting up we can try that,” and let the patient be the one to tell you that they can walk.

You care a lot about the person you are visiting in the hospital, so it’s natural to want to ask how they are doing when you walk into their room. Instead, say “Hey, it’s so good to see you!” to avoid sparking any feelings of sadness if they aren’t feeling their best that day.

Look to the patient for conversation cues. Don’t ask a lot of questions about their treatment plan unless they offer up that information. Patients spend a lot of time every day talking to their care team about their treatment plan and how they are feeling, so they may not want to talk about it again with you. It is, however, ok to ask them if they want to talk about how they’re feeling or their treatment plan, and give them the freedom to say no.

Never use the phrase “at least.” You may be trying to bring positivity to a sad and scary situation, but do not say “I know cancer is bad, but at least it’s not (insert any other condition or treatment setback here).”

Do not compare your own experience with cancer to theirs. Every cancer journey is unique, and patients aren’t receptive to hearing “I understand.”

Avoid using blanket statements such as “You’re my hero” or “You’re so strong.” Instead, tell them why they are strong, and what characteristics you see in them.

What to bring:

Bring an activity that you can do with your friend or loved one. Art projects, puzzles, crossword of the day, and board games are all great options.

Supplies to decorate their room is always a welcome surprise. This can also include cozy pajamas, slippers, twin sheets and cozy blankets.

Before bringing food, check with the patient’s parents or legal guardians. Some smells may bother them or they might not be eating typical food that day due to an upcoming procedure. They might not want food then but may want snacks to keep in their rooms.

All rooms have DVD players and Xbox consoles. Patients can checkout movies and video games from the Family Resource Center or the child life department, but bringing them a fresh stash of entertainment can be a thoughtful gesture. Mini speakers are another way that you can help patients relax by listening to their favorite music.

The CHOC Children’s gift shop, located on the second floor of the Bill Holmes Tower, offers a variety of games, books, arts and crafts, stuffed animals, toys, mylar balloons and more. Loved ones can call 714-509-8668 to place an order over the phone and arrange for it to be delivered straight to a patient’s room.

Don’t forget about the parents! Although care teams and social services at CHOC Children’s stress the importance of self-care for parents, having a hospitalized child often means that moms and dads forget about their own needs. Parents also appreciate things for their room to help them feel comfortable: cozy pillows and blankets, books and magazines, nice shampoo and conditioner all go a long way. Some families like aromatherapy as well.

visiting a child with cancer

Sometimes, our patients and families are just not up for visitors, but they would still appreciate your thoughtfulness. Be ok with dropping something off in the first-floor lobby and not feeling entitled to a visit. This shows that you are respectful of their space while they’re healing. Gift cards for gas, groceries, and local restaurants around the hospital are always appreciated. If you’re not local (and check with the family first), you can also order meal from a nearby restaurant to be delivered that they can pick it up in the first-floor lobby. CHOC’s Area Resource Guide provides information on nearby restaurants.

What not to bring:

Flowers are a beautiful and thoughtful gesture, but due to the bacteria that grows in soil, oncology patients are not permitted to receive flowers.

Download a copy of this guide

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Not Fighting Cancer Alone: Sydney’s Story

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

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

childhood cancer
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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