This website uses cookies that help the website function and that help us understand how you interact with it. Please read our privacy policy for more information.
A brain tumor diagnosis changes everything — not just for the person facing it, but for the entire family. For kids, it can be especially confusing and scary. You may have already had a difficult conversation about the diagnosis, but what happens next? As treatments begin and side effects appear, your child may have new questions, worries, and emotions to process.
Open and honest dialogue is essential to helping children understand what to expect during and after treatment.
Explaining Treatment and Side Effects
Plan to communicate about any treatment, ongoing symptoms, and side effects using tips from our “How to Talk to Kids About Brain Tumors” blog post: use age-appropriate language, keep it simple and consistent, provide reassurance, encourage questions, and share your feelings.
Helping Kids Understand Brain Changes
Providing simple explanations about how the brain works can make behavioral changes easier to grasp.
“Kids can conceptualize a broken leg that you can’t walk on and have to rest,” said Kelsey Mora, Chief Clinical Officer of Pickles Group, a nonprofit that provides free peer-to-peer support to kids and teens impacted by their parent’s or guardian’s cancer. “It hurts, and you can’t use it, so you have crutches or a wheelchair. But when you have a brain injury, the brain rest is really confusing to kids that too much light or too much sound can actually be sensitive to someone with a brain injury. It doesn’t always cause visible swelling or bruising, but it causes these changes in mood and personality or seizures. That’s why it’s so important to teach kids about the brain and how it controls the whole body, because it’s not something you can easily see and understand.”
Depending on the child’s age, look for a coloring page of the brain or find a child-friendly anatomic picture of the brain to show kids how the brain works. “Coloring Cancer: A Colorful Way to Understand Brain Tumors” is a great place to start. You can even try making a playdough brain and using a different color to represent the tumor.
“Parents can explain there is a section [of the brain] that’s focused on personality; there’s a section focused on mood regulation,” Kelsey said. “They can talk about when there are cancer cells or a tumor in the brain, it can impact those specific areas of the brain. Drawing that and showing kids helps them distinguish that the behavioral changes are from the tumor and not the person they know or love. It doesn’t necessarily make it easier, but I think it helps them understand that there’s a distinction.”
Treatment
Treatment, whether it’s surgery, chemotherapy, or radiation, can result in physical changes that your child may notice. Be proactive in explaining what to expect, so these changes don’t come as a surprise.
Amanda P. talked to her kids after her husband was diagnosed with glioblastoma. “We used the words chemo and radiation, and we talked about what they could expect,” she said. “We also talked about things like losing hair, so they wouldn’t be surprised if they saw it happening. It was all about proactively preparing them for what they would see.”
Craniotomy Scar Example: “I want to prepare you for when you see your Dad. In order to remove the tumor or clump of cells from his head, they had to make a small opening during surgery. The skin is healing with stitches or string band aids, and the area looks a bit bruised or swollen. It might be a little shocking or difficult to see at first, but it’s how the doctors are helping him, and he is healing.”
Radiation Hair Loss Example: “Mom will lose some of her hair because of radiation. While the radiation is trying to get rid of the cancer cells, it gets some of the healthy cells, too. This causes side effects. One example is losing hair. It’s part of the treatment and a sign that the treatments are working hard, but it means that Mom may look a bit different.”
Parents can involve their child in small, age-appropriate ways, ensuring the child has the option to choose how much or how little they participate or are included in.
“For kids under the age of 10 or 12, they want to help,” said Martha Francis, a nurse practitioner in radiation oncology at the University of Maryland. “If they’re comfortable with it, say, ‘Johnny, can you help me? Let’s do Daddy’s skincare and help me put this lotion on.’ Together, they are participating, and it doesn’t seem so scary. It may look different, but [it can be] reassuring to the child that they can touch this just like we touch our own skin.”
Treatment can take an emotional toll, and it’s normal for your child to experience a range of emotions as they process everything. Let them know that feeling sad, relieved, frustrated, joyful, or fearful is part of the process, and it’s OK to feel those emotions.
Side Effects
The brain tumor and its treatment may bring physical and/or behavioral side effects. Talking about these changes can make it less frightening for your child, and it’s important to distinguish these effects from the person.
As the parent’s symptoms or side effects from treatment begin to show, explain to your child why they’re happening. For example, if the medication is causing mood swings, you can say:
“Mom is taking medicine for the tumor. Some medicines can have strange side effects, including making Mom more irritable and even angry. Have you noticed Mom yelling more? It’s important to know that it’s not Mom’s fault — it’s the medicine’s fault. Let’s come up with ways to help you feel safe and supported in those difficult moments.”
This conversation allows your child to better understand the connection between treatment and behavior while encouraging them to express how it makes them feel. It also opens the door for finding solutions together.
Similarly, explain when symptoms and side effects are due to the tumor. It can help to start by explaining the science of the brain and its many functions. If a parent is struggling with word finding, you could say, “Because of the location of Dad’s tumor, it makes it harder for him to remember words sometimes. If he pauses or forgets what he is saying, he might need a little extra time to find the right word.”
If treatment makes a parent feel fatigued, you could explain how that might impact the child: “The treatment Mom is getting can make her very tired. That means she may need to rest more, so Grandpa will be helping us by picking you up from school.”
“Parents want to fix things for their kids, and they feel helpless when they don’t have a solution,” Kelsey said. “You can feel so helpless having to say to your kid, ‘I’m sorry that I don’t feel well, or I’m sorry that I can’t make it to your baseball game.’ Remember that what kids actually are looking for a lot of the time is support — just a supportive presence, validation, someone who is listening and hearing their concerns. At Pickles, we talk about listening first, then validating and reassuring, and just recognizing that we may not have an answer, and that’s OK because not all aspects of cancer have quick solutions.”
Children may have their own worries or misunderstandings about what’s happening. Asking them how they feel or what they’re concerned about can provide insight into what is bothering them the most.
Addressing Ongoing Symptoms and Uncertainty
It’s important to explain to children that while treatment may be over, their parent may continue to experience symptoms and side effects. Some days, their parent might feel okay; other days, they may need extra rest or may experience ongoing symptoms.
You might say:
“Even though my treatment is done, my body is still healing. Some days, I might have a lot of energy, and some days, I’ll need to rest more.”
“Even though treatment is done right now, Dad’s brain is still hurt from where the tumor was, and it takes time to heal and recover. That’s why he continues to struggle with remembering words.”
By normalizing good days and bad days, kids will better understand that ups and downs are a part of the process. The Dot Method, an interactive workbook designed to teach children about cancer, includes a page on how to navigate both good and challenging days.
Talking About the Unknown
One of the hardest parts of a brain tumor diagnosis is the uncertainty that comes with it. Kids may ask tough questions like, “Will you have to have surgery again?” or “Will your cancer come back?” or “Will they start remembering again?” It’s OK to be honest while offering reassurance. Avoid making promises you can’t keep, but emphasize that the family will face any challenges together.
You might say:
“Right now, my doctors are watching me very closely. If anything changes, we’ll make a plan and update you.”
“It’s possible that I’ll lose my hair again. It depends on the treatment.”
“Dad has scans every few months to make sure everything is OK. If anything changes, the doctors will let us know so that we can make a plan and let you know.”
“Right now, everything looks good. But if we ever have to do treatment again, we’ll handle it just like we did before, together.”
Children often struggle with the unpredictability of a parent’s health, which can lead to anxiety and worry.
“There will be unexpected changes,” said Kelsey of the cancer experience. “Maybe there’s a last-minute hospitalization, and you’re trying to tell that to your child when they get home from school. The more you’ve established a foundation of how you’re talking about cancer with your kids, the more it can actually make it somewhat easier or more approachable to then have those conversations. ‘Remember how Mom has those cancer cells, and she’s taking the chemotherapy, which makes her more sensitive to germs? Well, she has a fever today, so she had to go to the hospital to get an extra checkup. She should be home soon.’ That’s an unexpected change, but they have a foundation to be able to understand what’s happened.”
As kids grow older, their understanding of illness deepens, and they may start asking more detailed questions, especially if a parent is facing recurrence. Once again, it’s important to provide age-appropriate information, and it’s common for children to need to revisit conversations over time as they grow, develop, and continue to process things.
“We’ve always known that if and when the cancer comes back, the conversations were going to be a little bit different with the kids,” Amanda said. “We can assume that they’re more aware of the word ‘cancer’ and how that impacts families because it’s all around everywhere, and they’ve had a Dad who has scans every three months.”
Remember, you don’t have to have all the answers. It’s OK to say, “I don’t know, but we’ll figure it out together.” What matters most is that your child knows they can come to you with their fears, questions, and feelings, and that you’ll figure it out together.
Resources for Children, Teens & Young Adults
When a parent has been diagnosed with a brain tumor, it can have a profound impact on the entire family. Resources are available to help children, adolescents, young adults, and their families navigate the emotional and practical challenges that arise from a brain tumor diagnosis.
