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READ MOREPublished on July 25, 2024 in Educational Resources
Upon learning they have a brain tumor, many patients worry about how they’re going to tell their kids and what the news means for their family. As treatment begins and later ends, other parenting challenges begin to emerge. Co-parents, too, find themselves trying to balance caregiving, parenting, and managing their own emotional well-being.
This blog post aims to shed light on the many parenting challenges facing families impacted by a parent’s brain tumor and provide practical tips and strategies to help patients and their co-parents navigate their brain tumor experience. For the purpose of this post, the term “parent” represents any parent or guardian responsible for the care of a child.
“Parents have a lot of concerns, but they want to find ways to love their kids through this hard thing and figure out how to do it thoughtfully,” said Kelsey Mora, CCLS, LCPC, 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.
Parents can play a crucial role in helping their child(ren) deal with heightened emotions following a parent’s brain tumor diagnosis.
“It was ‘easy’ to explain to my children that dad was sick or had a disease or had something wrong, that was the easy part,” explained Jason N., who has glioblastoma. “The hard part was how that would affect them and how they would process it. How would they do in school? What did it mean when they came home from school, and I wasn’t present?”
Like adults, each child will react differently to watching their parent go through treatment and deal with the symptoms and side effects of their disease.
“It’s normal for kids to feel scared, feel sad, maybe even feel playful and happy,” Kelsey said. “Just normalizing and validating all those feelings can really help them.”
Parents can show empathy by sharing their own feelings and letting them know that it’s normal to have a wide range of emotions. They can ask their kid(s) what they’re thinking or how they’re feeling about the changes happening around them.
“It has been difficult to help the kids work to understand their emotions surrounding this experience, but one thing my wife and I have encouraged our kids to do is to feel their feelings,” said Kasey T., who has grade 3 oligodendroglioma. “We make sure to let them know it is OK to be scared, sad, or angry sometimes. We encourage them to share their feelings with us and let them know that it is OK to feel.”
When parents talk openly with their children in an age-appropriate way, they convey to the child that they aren’t alone in their feelings and experiences. Reassuring the child they are loved and supported lets them know the family will face this challenge together.
Even children who are young adults may look to their parents for information and comfort.
“It’s been difficult because even though they are adults, I’m still the adultier adult,” said Patty S., who has meningioma. “I have to comfort them and tell them it’s going to be OK even when I’m terrified.”
“Not every kid needs a therapist,” Kelsey explained. “With honest information, coping skills, and even connection to peers, they can do really well.”
Kids may react emotionally about the changes taking place, but parents should take note when the behaviors seem really extreme or out of proportion with the situation, such as:
A parent’s intuition is usually a good indicator of whether the child’s behavioral changes are prolonged or concerning enough to warrant additional support. In these instances, parents can seek help from a therapist to help their child process their emotions and develop coping strategies to manage their anxiety and frustrations.
“A pediatrician, the hospital, school social worker, and faith-based organizations are good places to go to get trusted referrals for mental health organizations in the community,” Kelsey said.
When looking for a mental health professional, ask if the therapist has experience with medical illness or even grief to ensure they have background supporting kids in situations like this.
Kids benefit from structure and predictability, especially when facing a significant life change.
“Kids are kids, so they want to play, they want to hang out with their friends, they want to do their typical things and feel a sense of normalcy,” Kelsey said. “They also worry, ‘How is this going to affect me?’ I think trying to keep things as normal and consistent as possible when navigating brain cancer can really help kids feel a sense of stability and control.”
Routine and structure, from attending school to continuing regular play dates, are helpful to maintain when possible.
“When you’re diagnosed with a brain tumor or brain cancer, you don’t want your kids to miss a beat,” said Jason N. “You want them to be kids. You want them to go to school. You want them to play their sports. You want them to do all of the things they would have done prior to your diagnosis. They certainly can’t control the fact that life has changed for them, so for us, it was really hard to balance the idea that you’re going to chemo and radiation every day, you don’t have a driver’s license, and your kids are still trying to participate in football, swimming, or whatever the sport may be.”
Talking about the need for changes in the routine can go a long way with kids. For example, a parent can tell their child that they are still going to soccer practice, but someone else has to take them. In other instances, it could look like reducing the number of activities and only focusing on what’s most important to the child.
“The reality is that sometimes there will be big changes and big impact and big disruption,” Kelsey said. “Trying to prioritize what’s most important to them and communicating what’s possible and what’s not takes the uncertainty out of things.”
Validation without judgment can help kids cope with these changes. It could look like, “I know this isn’t what you wanted. This isn’t what I wanted, either. This change is really hard. I wish you didn’t have to stop doing this.” If you’re still trying to decide on potential changes, it could sound like, “Things are going to look a little bit different for our family, but we’re still trying to figure some things out. We promise to update you as we know more.”
Being a parent can be stressful — providing meals to kids, getting them to extracurricular activities, managing scheduling conflicts, helping with homework, and preparing for bedtime, among other responsibilities. A brain tumor diagnosis adds new stressors to a family — getting to appointments, worrying about the unknown, dealing with new side effects and symptoms, and much more.
While it may feel out of one’s comfort zone, parents can find support in maintaining their child(ren)’s routine when they ask for help.
Trusted sitters — grandparents, extended family, parents of their kids’ friends — can help transport kids to school and extracurricular activities. Caregiving apps allow patients and their care partners to set up a way to notify their community about transport needs.
“Being a parent while also being a caregiver was no easy task,” said Cameo D., whose co-parent had glioblastoma. “I’m not someone who likes to ask for help, but I had to learn and be OK with it.”
Community support can also help parents continue family meal times. When someone drops off a meal or provides a gift card for delivery or carryout, the parent with a brain tumor may be able to conserve their energy so they can join their kid(s) for dinner.
“Not having to worry about meals was a lifesaver,” Cameo explained.
For some families, a diagnosis compels parents to rely on scheduling more than they might have in the past. Physical family calendars or digital calendars and apps, including the previously mentioned caregiver apps, can help keep the whole family in the loop about upcoming activities and appointments.
“For so long, he couldn’t drive, so our days had to be scheduled around his treatment plans,” Cameo said. “We tried our best to schedule appointments around getting the boys to school and so I could still work. During chemo weeks, we had to be extra intentional with planning around meals to avoid being up all night with him being sick. We had to be intentional about our daily planning, and I had to learn to be extra flexible.”
Fatigue is a common and debilitating symptom for many people living with a brain tumor. Patients can experience physical and cognitive fatigue, creating unique challenges for parents.
“I still have fatigue every day,” said Chaka C., who has meningioma. “I try not to say I’m tired all the time because I feel like a broken record in front of my kids. I frequently remind myself of a saying I came up with, ‘Give yourself a little grace, as we are all living this life for the very first time.’”
Patients can follow these tips as they try to manage their fatigue as a parent.
Without knowing the reason for the parent’s fatigue, the child may use their imagination to come up with a reason why their parent can’t do activities with them. Educating the child on why their parent is tired helps them know why they might be sleeping more or unable to join them at an extracurricular activity while reassuring the child that it’s not their fault.
“My wife is amazing and really takes care of so much for me and the kids to ensure I can get as much rest as I need on the days where I am really feeling fatigued,” said Kasey T. “If I am tired to the point where I don’t have energy to be out and about with the kids, I explain to them that my treatments make me feel a little sick sometimes, but I reassure them that it’s the medicine fighting off the bad cells and that I just need to rest so my body can continue fighting and healing.”
Another way for parents to explain symptoms like fatigue is to think of comparing brain cancer to a brain injury to try to make it easier to understand.
“Kids can conceptualize a broken leg that you can’t walk on and have to rest,” Kelsey said. “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.”
“There are days where you’re good and days where you’re bad, and that’s OK,” said Martha Francis, a nurse practitioner in radiation oncology at the University of Maryland. “You don’t have to be afraid of that. I tend to use humor as an outlet, which isn’t for everyone, but maybe as a family, come up with a code word, whether you come up with a funny name for the tumor or this is one of those smelly skunk days. Dad’s feeling worn out, and it’s OK to name it and recognize that it can also be part of the experience.”
After a while, a patient may recognize a pattern of when they can expect to be more or less fatigued. Look for moments when fatigue is expected to be less severe to handle child-related responsibilities that require more energy and focus.
“When they need help with homework or other activities like writing essays for college applications, I’ve learned to share with them that I’m really tired and ask them to try to plan ahead,” said Pam*, who has glioblastoma. “If you need help to write this essay, can we do it earlier in the evening before dinner so that we don’t wait until 10 o’clock when I’m too tired? Or I’ll ask what the plan is for this week and what they need help with so we can plan ahead for which night will be best for me to help. I put it as I’m going to be more help to you if we do it earlier.”
As a patient, the parent obviously cannot choose their symptoms or how the treatment is going, but they can choose to focus on love, prioritize what’s important at home, and communicate honestly with their child(ren).
“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 a 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.”
When the parent with a brain tumor does have a day when the fatigue is more manageable, the parent can emphasize intentional moments of connection with their kid(s). Martha Francis, NP, suggests that when a parent has a couple of bad days in a row, there will likely be a good day that follows — even if it’s just an hour when symptoms have lessened. Take that opportunity to “cuddle in together when it’s good” and make those moments of connection.
“Communicating to my children how much I love them and how important they are is a daily thing,” said Kasey T. “I will never let a day go by that I don’t tell each one of them how much I love them and how special they are.”
The book Horizontal Parenting: How to Entertain Your Kid While Lying Down provides 50 fun and effective activities designed to entertain kids. For families with kids 2-5 years old, parents can request a Bright Box with six art projects so that parents “can love them well, in the midst of sickness and fatigue.”
Both parents and children can experience changing roles within the family as a result of a brain tumor diagnosis. Role changes could look like:
“I have teenage daughters,” said Pam*, who has glioblastoma. “One of the ways that we would talk and have time to bond would be while driving them to activities, taking a walk in the neighborhood, or going into their room at the end of the night and sitting down to talk or share our day. Those things are harder to do now because of physical mobility. I don’t drive anymore, so I’m not the one driving them to activities or school. My husband has taken on that role where that used to be my role in the family.”
Pam* continued, “Now my older daughter is the one who drives us to go to lunch, to the mall, or to get our nails done. At first, that was really hard for me because I felt like I’m the mom. I’m the one that’s supposed to take us, so we as a family have adapted to that. At the end of getting our nails done, she has to grab my card and pay because my left arm doesn’t work as well. While these changes have been hard and emotional, with time, support, and good communication, we have adapted and found new routines. Also, when feeling frustrated or sad about these life changes, I reflect and remind myself to feel grateful that I’m here to experience these things because when diagnosed, it wasn’t clear I’d even get to be here for these special moments.”
The Canadian Cancer Society suggests holding regular family meetings to schedule upcoming appointments and activities, ensure everyone has necessary transportation, and assign critical tasks for the week ahead (e.g., sign a field trip permission form or bring a birthday treat to school). This frequent discussion helps spread duties among family and friends to minimize overloading one person with all the caregiving and family responsibilities. Extended family members and friends can also look for ways to support the caregiver if they’re struggling with additional tasks and stressors.
The Canadian Cancer Society also reports that “these meetings can be a good way to spend time together while checking on how everyone is coping. During the meeting, talk about anything – good or bad – affecting family life.”
In situations where there is a co-parent involved, prioritizing honesty, love, and concern can help ease communication with the parent living with a brain tumor. By each co-parent honestly sharing their perspective of the situation with the other co-parent, the two can better understand where they’re coming from. For example, the patient may now have weakness in her right arm. The co-parent may assume that her distress is due to feeling devastated because of her right-arm weakness. In reality, the distress is because she feels like more of a burden to her co-parent because now she struggles to physically help care for the kids or make meals.
“Unless [they] share that, [the co-parent] would never know that,” said Martha Francis, NP. “Having the support to share that and build a combined experience sets the stage for openly talking about what’s going on. Recognize that you’re all trying to just get through this experience.”
There are many helpful educational resources, books, and organizations to help parents navigate a brain tumor diagnosis.
Bright Spot Network, a nonprofit supporting cancer survivors who are parents of small children, has a program called Bright Reads where parents living with cancer can request free, age-appropriate books about dealing with big emotions, cancer and illness, and grief and loss.
The organization also created book discussion guides that parents can use to prompt conversations with their kid(s) and activity ideas to engage their children after reading the book.
Kelsey Mora, CCLS, LCPC, created an interactive workbook called The Dot Method to help teach kids about cancer. This workbook is intended for children impacted by any cancer relationship and is most appropriate for children ages 4-12.
Children often feel more comfortable sharing their thoughts and feelings with peers going through the same experiences rather than adults who may not fully understand.
Bright Spot Network offers young children an opportunity to connect with other children who have a parent with cancer. Their Bright Circle group is for ages 0-5, while their Bright Club group is meant for kids ages 5-11.
CLIMB is a six-week program, funded by The Children’s Treehouse Foundation, available at select hospitals throughout the United States and beyond to offer interactive sessions for children of patients with cancer to come together to deal with their feelings.
Kesem provides free week-long overnight summer camps in these regions, day programs, and virtual meetups for youth ages 6-18 facing a parent’s cancer diagnosis.
Families can register for their free, expert-designed five-week virtual national Connect Over Cancer program, which has a social, emotional curriculum for kids ages 6-18 to connect with other kids, share their thoughts and feelings, practice coping skills, and have fun. Registration for the next cohort in 2024 closes in mid-September. The program is offered on a quarterly basis. In November 2024, the organization will roll out ongoing monthly peer groups, called Pickles Jars, for families who want ongoing year-round support.
“What we’re building at Pickles Group is a great place to start,” Kelsey said. “We help parents have these honest conversations, navigate changes and expectations, and share feelings. Their kids learn and practice coping strategies and have a safe, supportive community of kids who get it.”
Parents can go online and request their Family Cancer Support Kit, available in English and Spanish, which provides three guiding tips for talking to kids about cancer as well as common developmental responses to cancer from different age groups. They also offer free educational webinars about how to talk to kids about a parent’s cancer.
* Note: NBTS altered this patient’s name to protect the privacy of the quoted individual.
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