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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How a Bone Marrow Transplant Changed My 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 six CHOC Children’s patients who have benefited from a bone marrow transplant.

Diego, age 23

I was diagnosed with pre-B Cell acute lymphoblastic leukemia on January 11th, 2009. Thankfully, I landed in a great hospital that quickly gave me hope and strength to fight. Everything was going perfect. I received one year of intense chemo and about two years of remission chemo. Unfortunately, I relapsed one month before finishing my treatment. I hated the fact that I’d have to start from zero with a whole new treatment that included radiation. I relapsed a second time a few months after receiving radiation. I would see and meet other patients who were diagnosed and finished with treatment in only a couple months. When I talked to my doctor about what the next step was, I was happy because I would be receiving the same treatment as the other patients – I would be receiving a bone marrow transplant. Even though it is a quicker treatment, it is also tougher. The first step was finding a matching donor.

I was very lucky that I found a donor in my family; my sister was a 100 percent match! Finding a donor that matches 100 percent means that your risk of side effects is lower. It was just before Christmas that we got news of the match, so on Christmas Day I gave her a card asking for one more gift – if she could be my bone marrow donor. That Christmas, the whole family cried tears of happiness.

bone marrow transplant

Tori, age 21

I have been a patient at CHOC since I was 19, when I was diagnosed with acute myeloid leukemia. After my first round of chemo, my doctors determined that receiving a bone marrow transplant would give me the best chance for remission and lessen the chance for relapse. With three possible matches found on the registry, the first person my doctors called backed out. The second person they called said yes but unfortunately the hospital they went to have tests done at made a mistake on a time-sensitive lab that would have to be redone. My doctor didn’t want me to have to wait any longer to undergo a treatment that could possibly save my life. On April 12, 2016, I received a bone marrow transplant with my dad as my donor. I have been in remission ever since!

bone marrow transplant

Aric, age 25

My bone marrow transplant was on April 14, 2017 as part of leukemia treatment. It was kind of difficult, but I was always positive and kept busy by reading, playing video games, and watching my favorite Netflix show, Stranger Things. My family would come over to play games and bring me fresh clothes. My friends would come over and chill with me, bringing things I needed to make me forget about being in the hospital. They also brought my TV from home so I could play my Xbox better. The first month hit me hard with fevers and vomiting, and it’s weird to say, but I got used to that. Now, I have passed the 100-day mark and I’m so happy and I feel better. I just need to follow my doctors’ orders and I will be okay.

bone marrow transplant

Aileen, age 22

I got diagnosed with sickle cell anemia shortly after birth. For years, I was in and out of the hospital due to my pain crises and other health-related problems. Over time all the complications built up and my bones and organs started getting damaged due to excessive amounts of medications, narcotics and blood transfusions. The doctors told me as I grew older that I would have more complications. When I turned 18, they insisted I get a bone marrow transplant. At first, I didn’t want one because I was afraid of chemo and all the obstacles it would bring. As time went on, my health got worse and my pain crises were more frequent. I would be hospitalized for weeks at a time and then once I got discharged, I’d only be home for maybe a week or two before I had to be admitted again. Once I turned 20, I made the decision to go through the transplant process. I was lucky enough that my brother turned out to be my perfect match. On August 26, 2015, I received my brother’s bone marrow. I am now cured and am happier and healthier than ever. I have not had a pain crisis since! Getting my bone marrow transplant was the best decision I’ve ever made!

bone marrow transplant

Ralph, age 24

I am a two-time cancer survivor and bone marrow transplant recipient. I was diagnosed with testicular cancer at age 14, and relapsed with secondary acute myeloid leukemia at age 19. As soon as my treatment began I was told I was going to need a bone marrow transplant. The bone marrow I received came from the umbilical cord blood of two different European children, not from a single donor’s bone marrow. This experience has taught me that even though the donation pool is great and diverse, there is still more we can be doing to help save lives, not only domestically but also overseas.

bone marrow transplant

Kamron, age 20

My bone marrow donor saved my life! I’ve been in remission ever since I received my donor’s bone marrow. I was diagnosed with non-Hodgkin’s lymphoma at 17 years old and kept relapsing post-treatment. It wasn’t until I was transplanted with a new bone marrow that I’ve been in remission the longest. Please register today and you could help save someone’s life!

Learn more about the Blood and Marrow Transplant Program at CHOC Children's

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Lessons Learned During a Senior Year Spent Fighting Cancer

aya

By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

aya

As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

 Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Oncology Patient Returns to CHOC as Oncology Nurse

In honor of Childhood Cancer Awareness Month, we share a poem written by Kim, a registered nurse in the hematology/oncology unit at CHOC Children’s, at the time she finished her training. Kim is a cancer survivor and former CHOC patient.

Serendipity

I had no idea what this was going to bring up

All these memories and feelings I have folded so neatly in a cup

Tucked away never again to be touched

Walking back into CHOC, oh how I have forgotten so much

You see, I once had cancer too

I came back as a nurse to see what I could do

I once told my own nurses, now peers, I will be back. Something I am sure they heard before

10 years later I walk through CHOC’s door

As a registered nurse I am proud to be

But I never underestimate the patient that is still inside of me

People have told me it takes certain strength to face it again

“Doesn’t it remind you of all your pain?”

My pain?, I think, I am one of the lucky ones.

I get to come to work and I have fun

I am allowed to make funny faces

I make kids laugh and participate in car chases

I am able to share in life’s precious moments daily

Except for the need of possibly doing a Foley

Even when I am running around like a chicken with no head

I will always take time for that scared kiddo sitting in the bed

There are times when I step back and remember

When that was once me waiting for a cure

This hasn’t been easy, seeing the chemo’s and procedures

And sitting through those late effects lectures

Sometimes when the day has been hard I ask myself, “Why did I pick THIS? What else could I have been?”

But I quickly remind myself I didn’t pick this- it picked me way back when.

I am surrounded by hope, a side people do not see

For I am a proud survivor and now registered nurse of pediatric oncology.

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