For parents of kids with cancer, one of the biggest challenges is telling and talking to their child about the diagnosis. These are important conversations to have, though. If they’re not told, younger children will make up their own explanations. They will often blame themselves for their condition. Older children, meanwhile, can understand what’s happening to them, so keeping information from them is difficult, if not impossible. In both cases, children who understand their condition and treatment are more cooperative with care and less stressed.
Exactly how to tell a child told about a cancer diagnosis should be left to you as parents, who know your child the best. This can be a very difficult conversation, so you can ask someone on the care team to help.
Before having this conversation, you should plan out what you're going to say and how to say it. Think about the questions your child might ask and be ready with answers. Common questions children ask include:
- Why me?
- Will I get well?
- What will happen to me?
Talking on their level
When having these conversations, use age-appropriate language that is clear and direct. Explain meaning of words that the child might not understand, and don’t avoid the word cancer. Children will hear others use it. If you don’t, it might confuse them.
How exactly you talk to your child will depend on his or her age. Younger children have shorter attention spans, so be ready to have frequent, brief conversations about their diagnosis with them. Encourage them to ask questions as they think of them.
Other age-specific advice includes:
Up to age 2
Children at this age don’t understand cancer. They only understand what they can see and touch. Most of the time, they’re worried about what’s happening at that particular moment. They’re scared of being away from their parents in an unfamiliar place. Let them know that you’ll be with them the whole time and that they’re not going to be left alone at the hospital.
Because so much is out of their control and just not understood during treatment, young children can feel powerless during treatment. Give them a sense of control by letting them make small choices whenever possible (e.g. “Do you want to color or play a game?” or “Do you want milk or juice?”).
Older children in this group can understand simple things like visiting the doctor or getting a shot. For these children, be honest with about medical tests and treatments, using simple language that’s easy to grasp. Say it’s ok to cry or to be scared and that they can turn to you for comfort.
Ages 2 to 7
Younger children can understand some basic explanations about cancer. You can tell them that some bad cells in their body that are making them sick, and that treatment is supposed to help get rid of the bad cells and help them get better. Be honest about treatments, acknowledging that it may hurt, but that you’ll be there to help them. Don’t let them fill in the blanks about what is happening and why. At this age, children will make up their own explanations for their illness, and will often blame themselves.
Ages 7 to 12
During these years, children can understand more complicated explanation about their illness, including what may have caused it and how certain treatments work. They can also understand the value of treatment, though they’re still afraid of the pain and discomfort it might cause. Explain to them more directly what’s happening, using age-appropriate language.
At this age, children can pick up news about cancer from television or school. Ask them if they have any questions about their condition, or if they’ve heard anything they want to talk about.
Teenagers are able to understand complex explanations of their condition, and may have complex questions. They understand the connection between treatment and health and may want to have a say in treatment decisions.
They tend to think about their disease in terms of how it will impact their life, such as their friendships, activities, schooling, etc. They may also be concerned about side effects, like hair loss. Talk honestly with them about what they can expect.
MD Anderson has several programs designed to help young people during their cancer treatment. Visit the Children’s Cancer Hospital’s Support Programs page for more information.
The Children's Cancer Hospital also offers a special Adolescent and Young Adult Program for patients age 15-39. This program provides counseling and resources designed to help patients dealing with cancer at such a pivotal time of life.
Three years ago, at age 17, I was diagnosed with melanoma. As I learned, cancer is tough, especially for teens, who often think they are immune to it.
For teens, a cancer diagnosis isn’t expected at all. Most teens think that they aren’t susceptible to any type of cancer. As parents and adults, the best thing we can do is educate young people about the dangers of cancer, and how every little thing -- sunburns, not using sunscreen, not taking care of yourself -- can affect you, now or later.
When dealing with a teen who has cancer, here are a few things to keep in mind.
Teens are scared
First of all, even though they may not show it, they are scared.
Teens don’t spend their time researching cancer and other diseases, so fear of the unknown is great. A lot of times, teens will try to act like adults and be strong after finding out they have cancer, but the news can often be too much for the teen mind to comprehend.
Let teens come to you at their own pace
Teens also don’t really like asking for help. When I had cancer, I constantly had to ask for help -- help carrying my heavy bags, help cleaning my bandages and help driving to appointments. Teens want to do it all, so having to rely a lot on others during cancer treatment and surgeries is a definite lifestyle change.
It’s important to be supportive and available, but let the teen come to you at his or her own pace.
Respect communication wishes
Often, many teens will not want to talk about their cancer with people they know. Cancer can seem like a “weakness,” and teens want to feel invincible and youthful.
It took me three years before I felt completely comfortable sharing my story with anyone except those who are very close to me. As a parent or guardian, keep this in mind. Your teen may not want everyone in the world knowing that they have cancer, so be respectful of that. Cancer is a hard enough thing to deal with as a young person without the constant questions and comments that others will have.
Support makes a difference
Cancer is scary, especially for people who think they have many years to go before they have to think about it. Make sure you’re available for the teen in your life. She's not a teenager with cancer, she's just a teenager. Cancer doesn’t define anyone, and getting it at a young age should do nothing to deter a person’s feelings about herself or what she can accomplish.
As an adult, encourage the teens around you to go to their dermatologists regularly for skin checks. It might be hard to fit into a teen’s busy schedule, but it is absolutely worth it.
Autistic children with cancer often face unique challenges during treatment. Because autism spectrum disorder affects how a child communicates and interacts, families and doctors need to take extra steps to create a comfortable environment for these patients.
We spoke with Child Life Services Manager Nicole Rosburg and The Faris Foundation Music Therapist Melissa Melo about how parents and caregivers can help autistic and other neurodivergent children during cancer treatment.
Communicate early and often with your child’s care team
When it comes to communicating with your child’s care team, the earlier the better.
“The role of the Child Life team is to reduce anxiety for patients and families in the medical setting, and we work closely with other support programs to do so,” says Rosburg.
This means there’s a team of people working to make sure your child has the best experience possible.
“For example, if your child gets incredibly anxious when waiting for long periods, we can speak to their radiologist and say, ‘I know you normally ask patients to check in 30 minutes before their appointment, but this child can’t sit in a waiting room for 30 minutes. How can we work with you to change the process so this child can come to the hospital and go straight in for their MRI?’”
Other things parents should communicate to their child’s care team are:
- your child’s triggers
- things you fear that may trigger your child
- behaviors you’ve witnessed from your child in other scenarios
- your child’s previous traumatic health care experiences
- your child’s previous health care experiences that went well and why
Bring comfort items to appointments
Unfamiliar faces, noises and smells in a hospital could be a potential trigger for an autistic child. That’s why Melo suggests parents bring items that are comforting to their child to every appointment.
A “coping bag” could include a tablet, a soft blanket or any other item that can be used to comfort or distract an anxious child.
“These items can help regulate the child in that moment,” says Melo. “For example, a blanket could smell like their bed at home, which brings them back to a comfortable, safe space.”
Melo notes that parents shouldn’t be too hard on themselves if their child is struggling to adjust at first.
“Understand that this is a new experience, and it can be overwhelming,” she says. “You’re not doing anything wrong.”
Discuss the schedule with your child ahead of the appointment
Doctor’s appointments or cancer treatment can be disruptive to a child’s routine. To minimize this disruption, parents can create storyboards at home to use as a visual representation to help the child understand what to expect.
For example, a parent might use an image of a doctor in a lab coat or other images similar to a clinic setting to show the child what they’ll see when they arrive at the hospital.
Timers can also help prepare a child for what’s to come.
“A parent may say, OK, we have 5 minutes until we get poked,” says Melo. “‘Poked’ might mean a needle to draw blood or something else. It helps the patient understand that something is coming.”
On the other hand, if a patient is triggered by knowing something is coming, then a timer wouldn’t be advised.
“Each method depends on the individual patient,” Melo says.
Pay attention to body language
Autistic patients may have trouble expressing feelings, like when they’re in pain.
“I’ve seen doctors use the happy face pain scale, which uses happy faces to represent no pain and a sad or crying face to represent the worst pain possible,” says Melo. “Children can point to those faces or faces in between to communicate the severity of their pain.”
But for younger children, it’s important to pay attention to their body language.
“Are they hitting? Are they pulling your hair? Why are they frowning? Understanding the underlying foundation of why they’re doing what they’re doing guides us,” says Melo.
Parents are integral in this as well. A parent may know the child doesn’t like the color red, so the child becomes agitated when a nurse brings in a red ball to the appointment. In this scenario, the solution is easy: remove the red object from the room.
“With any neurodivergent person, their body language speaks to a lot more than what they can say,” she says. “So, I think the most important thing is to understand their body cues. We’re good at assessing those in the moment.”
Use the gift of music
In her experience working with pediatric patients as a music therapist, Melo notes that many autistic children are innately musical.
“They can connect with music and it comforts them,” she says. “They’re able to communicate through words that they cannot communicate with.”
If parents know of a song or instrument that brings their child comfort or joy, Melo encourages them to bring it to the hospital.
“We don’t care if it’s ‘The Wheels on the Bus,’ and we have to listen to it for 35 minutes,” she says. “If that’s going to help your child feel more comfortable, we’ll do it. I can also perform it live. Music can bring that relaxation from home into the hospital.”
Ask for what your child needs
Rosburg says constant assessment allows the care team to provide patients with the best care possible.
“After each appointment, we debrief to discuss what worked, what didn’t and how we can tweak our approach in the future,” she says.
Whether it’s asking the doctor to crouch down when visiting the patient, so they don’t appear tall and scary or requesting a live rendition of ‘The Wheels on the Bus,’ Rosburg says parents should never be afraid to ask for what their child needs.
“We have a ton of resources,” she says. “All we want is for the child to have a positive experience and the family to feel supported. Just tell us what you need.”
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
For better or for worse, the internet offers a great deal of health information.
Eating a healthy diet, exercising, following up with your cancer screenings and taking care of your skin are all ways to help lower your cancer risk. Just a simple online search can you give tons of information about any of these topics. But it’s crucial to make sure that the information you’re getting is correct so you can make the best decisions for your health.
We spoke with Wendy Griffith, a senior social work counselor at MD Anderson Cancer Center, to learn how to find the best health information. Here are her tips.
Don’t spend too much time searching.
When it comes to health information, too much isn’t always a good thing.
“The more websites you look at, the more information you’ll find, and it may start conflicting,” Griffith says. “You can find literally anything on the Internet.”
Instead of reading everything, just read information from a few sources you trust.
Consider the source.
To make sure the information you’re reading is reliable, consider where it comes from. Is it a government, hospital or well-known organization? Is the author a doctor or another health care professional, or does the article mention one? If you’re looking at a new diet plan, is there proof that it works? Does the medical community support it?
If you can’t find this information right away, look for an “About Us” page that may provide more information. When it comes to your health, it’s best to go straight to the experts.
Does the website address end in .org, .gov or.edu? “.Org” sites are maintained by nonprofit groups. The federal government’s sites end in “.gov”. And universities or medical schools run sites that end in “.edu”. These sites are often more reliable for health information than “.com” sites.
“There are plenty of good ‘.com’ websites out there, but you have to be more careful,” Griffith says.
Find out when the information was published.
Make sure the information is up to date. Health recommendations can change based on the latest research and studies. In many cases, information that is more recent is better. Griffith recommends making sure the health information you’re relying on is no older than three to five years.
Check with your doctor.
Share the information you find online with your doctor. That way you can learn if it’s correct and if it’s right for you. Because health care is so specific, what is right for one patient may not be right for others. Even if you are just exploring a new diet or exercise routine.
“Accurate health information can help you make sure that you’re doing the best thing for your body,” Griffith says.
Request an appointment at MD Anderson's Lyda Hill Cancer Prevention Center online or call 877-632-6789.