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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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Dr. Jamie Frediani joins Hyundai Cancer Institute at CHOC Children’s

Pediatric hematologist/oncologist Dr. Jamie Frediani has joined the growing team of innovative specialists at the Hyundai Cancer Institute at CHOC Children’s. Dr. Frediani looks forward to further advancing CHOC’s leukemia and lymphoma programs, as well as the adolescent and young adult cancer program.

“The Hyundai Cancer Institute is experiencing an exciting time of immense growth, including creating new ways of delivering exceptional patient care, developing new treatments, expanding patient outreach and education, and enriching existing treatment teams,” says Dr. Frediani. “I am thrilled to be a part of this growth, and honored to join such a supportive team of experts.”

Dr. Jamie Frediani
Pediatric hematologist/oncologist Dr. Jamie Frediani has joined the growing team of innovative specialists at the Hyundai Cancer Institute at CHOC Children’s.

After graduating with high honors from University of California, Davis with a bachelor’s degree in microbiology, Dr. Frediani completed medical school at University of Texas Southwestern Medical Center.  Her residency and fellowship training were done at Cincinnati Children’s Hospital and Children’s Hospital Los Angeles (CHLA), respectively. Throughout her education and training, she assumed numerous leadership roles.  Most recently, she was chief fellow of the department of hematology/oncology at CHLA.

Dr. Frediani has participated in numerous research studies, including working with clinicians at St. Jude Children’s Research Institute in Memphis, Tennessee. She has published in Molecular Cancer, Archives of disease in childhood and Pediatric blood and cancer.

Dedicated to patient-and-family-centered care, Dr. Frediani was inspired to become a pediatric hematologist/oncologist after volunteering in the child life department of a local hospital.  There, in the hospital’s oncology floor, she witnessed the amazing resilience of these patients and the unique relationship between the physicians and their patients and families.

“No matter how many other specialties I found alluring or interesting, my heart always lead me back to oncology.  In addition to how rapidly the science behind oncology treatment is changing, keeping the field constantly new and interesting, I find our patients a source of strength and inspiration.  I absolutely can’t imagine practicing any other specialty,” says Dr. Frediani.

Dr. Frediani’s philosophy of care is based on a multidisciplinary, collaborative and cooperative team approach. “A diagnosis of pediatric cancer affects the patient – physically, emotionally and mentally, as well as the entire family.  You can’t just address the medical treatment without accounting for the family’s spiritual beliefs, culture and family dynamics,” explains Dr. Frediani. “I want to empower our patients and families to make the best decisions for them, through the lenses they use to relate to the world. Most importantly, I want our patients to experience as much of a normal childhood as possible, in spite of the challenges of treatment.”

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

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10 Things a Registered Dietitian Feeds Her Own Kids

By Stephanie Chang, clinical dietitian at CHOC Children’s

As a registered dietitian and a mom, I always try to keep my family eating healthy. When people imagine what a dietitian feeds her kids, most people assume we eat perfectly healthy all the time. However, I also struggle to get my kids to eat enough fruits and vegetables, just like everyone else.

Getting my family to eat healthy starts with the choices that I make at the grocery store. What foods I put in my cart influences the food choices that my family makes at home. Since younger children tend to eat most of their meals with family or at school with lunches they brought from home, I like to make sure there are plenty of good choices at home.

Older children and teens may be eating more meals outside the home with friends. Family has less influence on what they eat at that point so it’s important to teach good choices at an early age. If you feel your teen hasn’t had the chance to make good food choices, don’t worry. It’s better to start now while they still live at home with parents.

These are some of the choices that I try to make when offering food to my kids. Keeping things simple and easy is key, since life is so busy.

Water 

Water provides hydration without adding calories and sugar. At CHOC Children’s, we recommend that children drink the number of 8 ounce cups of water equal to their age, with a maximum of 64 ounces for children over age 8. This means your 1-year-old would drink one 8-ounce glass or water, your 5-year-old would drink five 8-oz glasses of water, etc. I found that my kids prefer ice water and will usually drink more if the water is cold.

Low-fat dairy: milk, cheese and yogurt

Low-fat dairy foods provide a good source of calcium and protein. They are also usually fortified with vitamin D. I try to choose lower sugar options when it comes to milk and yogurt. That doesn’t always work, but I want my kids to have good calcium intake rather than arguing about sugar. I can always cut back on sugar somewhere else in their food choices.

Avoid preservatives, additives and high fructose corn syrup

I always read ingredients on any packaged foods I buy. Usually a simple and easy-to-understand ingredient list means the food is less likely to contain a lot of preservatives and added colors. I try to avoid purchasing foods with high fructose corn syrup and keep things as close to natural as possible. The exception would be vitamins and minerals that are added to enhance the food. Those do have chemical sounding names, but are just added nutrients.

Hard-boiled eggs

Eggs are a good source of protein. The egg white contains most of the protein in the egg and children generally prefer the white over the yolk. Another perk for parents is that hard-boiled eggs are easy to prepare for a family who doesn’t have much time to cook.

Fruit (and hopefully vegetables)

I always offer fresh fruit and a vegetable with each meal. My kids will almost always eat the fruit and only sometimes the vegetable. I feel that it is important to offer these foods every day, but not force them to eat it.

Whole grains and fiber

Foods made from whole wheat flour or other less processed grains and flours provide more fiber in the diet. Sometimes I find it difficult to get my kids to eat the high fiber choice, but when I can, I think it’s well worth the effort for them to learn that breads and grains are not all white.

Chicken

Sometimes I buy organic chicken and sometimes I buy regular chicken. More importantly, I’ve found that chicken is a good protein source that my kids will eat all the time, as long as it’s prepared in different recipes. Some kids don’t like beef or pork as it may be hard to chew or too dry. I don’t want my kids to eat processed meats (like deli meats, hot dogs and sausage) all the time, so I find that choosing chicken works the best.

Veggie straws or veggie chips

Yes, you read that correctly. I do feed my kids chips when they’re starving between meals. They are high in sodium just like any other chips, but veggie chips don’t usually contain the artificial colors and flavors that traditional chips do. I find that veggie straws make a good car or airplane snack because they can be eaten neatly.

Well-rounded school lunches with emphasis on protein, fruit and vegetables

When packing preschool lunch, I always try to keep it well rounded and make sure to include a protein, fruit and vegetable. I also include a starch or carbohydrate food in the lunch, but I don’t emphasize that as the main part of the meal. Most preschool snacks offered by the school are a starchy or grain food, like crackers or cereal. I let my kids eat the carbohydrate snack with their classmates and eat the other healthy foods for lunch from what I pack from home.

Home cooked meals

During the school and work week, I want my family to eat home-cooked meals. This requires a lot of meal planning, but this allows me to make healthier choices and save money at the same time. We try to limit restaurant food to weekends and only one meal in a day. Get healthy meal prep tips for busy parents.

As you can see from my list, it isn’t perfect. I don’t always buy organic, grass-fed, or the latest trendy health food. My kids do eat junk food and bug me to buy them cookies and candy. However, I feel that these basic and simple choices that I can make daily will improve my family’s health. These choices are available at the regular grocery store and don’t require trips to specialty stores. It’s important to remember that no child is going to eat perfectly all the time. Families are always busy, but making good food choices is important and doesn’t have to take a lot of time.

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Minimizing Health Effects of Wildfires

During a wildfire, the biggest health risks to children are fire and smoke. Health effects can include any or all of the following symptoms, per the American Academy of Pediatrics:

  • Chest tightness or pain
  • Shortness of breath
  • Wheezing
  • Coughing
  • Burning or stinging of the nose, throat and eyes
  • Dizziness or lightheadedness
How can parents protect kids from the harmful health effects of fire and smoke?
  • Evacuate the area if recommended by authorities.
  • Stay indoors and minimize smoke exposure. Close all windows and doors.
  • When driving, keep windows and vents closed. Turn the air-conditioning to re-circulate.
  • Avoid sports practices, games or extreme exertion if the air quality is poor.
  • Do NOT give your child a mask to filter contaminants, since masks do not work when not fitted correctly. Smaller sized masks may appear to fit a child’s face, but no manufacturers recommend their use for children.
  • Increase water intake to avoid dehydration, which can happen quicker when breathing is compromised.
  • Continue to minimize exposure to other sources of air pollutants such as cigarette smoke, smoke from wood or coal-burning furnaces, or smoke from a barbecue, as the combined effect of these smoke sources can have a greater impact on your child and family than the fire alone.
  • Children with chronic respiratory problems, such as asthma, are at increased risk. Children at increased risk should remain in a clean-air environment, and be kept indoors until air quality improves. Administer any protective medications to your child as directed by your provider. They should be monitored closely for signs or symptoms of harmful health effects. If they are showing these symptoms and their usual medications cannot bring them under control, they should be taken to a nearby medical facility, despite the risks of traveling.

wildfires

Parents should be mindful of the signs and symptoms of respiratory distress, says Dr. Charles Golden, executive medical director of the CHOC Children’s Primary Care Network.

What are the warning signs of respiratory distress?
  • Rapid breathing
  • Use of accessory muscles (the muscles in the chest, rib cage and neck) become noticeable with each breath
  • Fatigue, lack of energy, and increase in sleepiness in addition to the above symptoms
  • Flaring of the nostrils or grunting with each breath
  • Bluish/purplish discoloration of the lips, tongue and inner mouth in combination with the above symptoms

If your child has these symptoms, seek urgent medical attention despite the risks of travel and outdoor air exposure. If these symptoms are severe, call 911.

 

 

What to Expect at the CHOC Adolescent Medicine Clinic

By Cindy Sihotang, pediatric resident at CHOC Children’s

At the CHOC Children’s Adolescent Medicine Clinic, you will encounter a dedicated team of specialists whose focus is on comprehensive care. Adolescence is a time of growth and discovery with each teen having their own unique set of needs. You can be seen here for yearly physicals, sports physicals as well as acute sick visits. There is also a special clinic for evaluation and treatment of eating disorders.

What ages can be seen at the adolescent clinic?

Adolescents can start coming to the clinic once they are 13 and can continue to be seen here until the age of 21. We understand that is very broad range of ages with different needs and concerns. Your care is tailored and age-appropriate to ensure it addresses your unique needs and concerns.

 What questions will the doctor ask me?

The doctor will likely ask you a lot of questions― that’s just because they want to get to know you! They will ask about your diet, exercise, screen time and school performance. Your doctor will also ask about dental history, hospitalizations/surgeries, medications and family history. We also bring up some other topics that might be hard for you to talk about, but are still very important: drug, alcohol, tobacco use, and sexual activity. We will ask a series of questions to assess your mental health. I We have in-house psychologists who can meet with you during that visit.

What happens during a physical? 

What is discussed between a teen and their doctor is confidential. Parents are alerted when the physician senses there are signs of danger.During yearly physicals, we do a thorough history and complete physical exam. We check for appropriate growth, screening for disorders such as obesity and anorexia nervosa by checking your height and weight. Appropriate development is screened by inquiring about school performance. We screen for anemia with hemoglobin checks. Immunizations are updated following the CDC’s schedule. We are also able to provide screenings and treatments for sexually transmitted infections We specialize in helping teens with menstrual concerns, ranging from no periods to heavy periods, or even painful cramps. We can provide important counsel regarding overall health and safety. We will work with you to come up with a plan for healthy eating and exercise, and discuss safety issues such as driving under the influence, safe sex including contraception use, domestic violence, and safety with social media.

Will my parents talk to my doctor without me?

During adolescence, teens take more ownership of their health, and take on some responsibilities that used to fall to their parents. This growth is fostered by providing confidential time for the adolescent to speak one-on-one with their doctor during each visit, without their parent present. Anything discussed during this time is confidential, meaning it stays between the patient and the provider.

What is meant by confidential time to talk with the doctor?

As a teen, you may have significant questions or concerns you’re hesitant to discuss with your  doctor while a parent is in the room. As providers, we wish to extend the most complete care possible. State laws protect confidentiality in issues relating to pregnancy prevention, testing and treating sexually transmitted diseases, and mental health. Teens are always encouraged to discuss these topics with their parents, since an open relationship builds trust and parents can provide a breadth of knowledge and experience. A teen’s confidentiality will always be respected unless there is a concern for the adolescent’s health or safety.

 Contact info and location:

The clinic has recently moved to the Centrum Building, located across the street from the main hospital. The address is 1120 W La Veta Ave #125, Orange, CA 92868. To make an appointment or for questions, call 888-770-2462.

Learn more about adolescent medicine at CHOC.

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