Tips to cope with a childhood cancer diagnosis

When a child or adolescent is diagnosed with cancer, it can affect every aspect of their well-being and every person in their life. Patients may feel scared and isolated. They often need to navigate challenges with self-esteem and body image related to weight changes, hair loss, and other things related to cancer treatment. Patients and caregivers alike may experience anxiety, depression, trauma and other mental health challenges.

"One of my mentors used to say that cancer affects everyone in the life of the child. It's part of their world," says Jenna Oppenheim, PsyD, ABPP, Pediatric Psychologist at Children's Health℠.

Children's Health is home to a robust team dedicated to helping families navigate the psychosocial aspects of a cancer diagnosis. Dr. Oppenheim and Julie Germann, PhD, ABPP, Pediatric Psychologist at the Pauline Allen Gill Center for Cancer and Blood Disorders at Children's Health, shared insights about navigating the mental and emotional aspects of childhood cancer and how to cope with a diagnosis.

Processing your child's diagnosis

When a child is diagnosed with cancer, their treatment typically starts as soon as possible — often while a family is still wrapping their head around a diagnosis and helping their child understand their diagnosis.

"In that first month, a lot of families are dealing with shock, disbelief, and wondering how this is possible, all while they need to make treatment decisions really quickly," Dr. Germann says.

In the beginning of cancer treatment, part of what feels scary is that patients and families don't know what to expect.

"I often tell kids and parents that the first time for everything is the hardest – first clinic visit, first admission, first chemo – but things will start to repeat and it gets a little easier when you know what to expect," Dr. Germann says.

Maintaining some sense of normalcy

Families are also faced with practical challenges like their child missing school, parents missing work, and caring for other siblings while a child is in the hospital. These shifts in schedule can make everything feel even more difficult.

"I always advise families to start by thinking about what's really important to your family and how we can maintain some traditions and routines, but with some modifications," Dr. Germann says. "Say your family has a pizza and movie night on Fridays. You can still try to keep that routine by bringing the siblings to the hospital and sharing a pizza and movie. These little routines help to keep some consistency and predictability when it feels like everything is unpredictable and new."

A few other ideas for maintaining a sense of normalcy:

• Keep a daily routine and schedule, especially if it incorporates things your child and family love to do. This could be keeping a consistent wake-up and bedtime, playtime, time for school work, nap/quiet time and mealtimes.
• Stick to very basic daily activities while in the hospital, such as getting out of bed, changing clothing and keeping lights on during the day and off at night.
• Help your child stay connected to friends. If they are unable to see them in-person, video chat and other virtual methods can be ways to maintain those relationships from afar.
• Bring things from home that make you and your child feel comfortable, like their favorite comfy clothes, favorite pillow and blanket or some small decorations.

Supporting your child's feelings

Childhood cancer is often a months or years-long experience filled with emotions. Dr. Oppenheim's care often includes giving children space to feel grief, anger and sadness.

"We help allow our patients to have a range of emotions and normalize what they are feeling," Dr. Oppenheim says. "It's okay to be sad and angry or grieve the loss of things they were looking forward to doing instead of cancer treatment."

A few ideas about how parents can help their child navigate the range of feelings that accompany a cancer diagnosis include:

• Approaching your child knowing that their feelings are valid.
• Knowing that when you notice an emotional change in your child, it is okay to not "fix" it. Children often express emotions through their actions, such as crying. It is important to acknowledge that feeling emotions is a healthy way of expressing themselves. Automatically trying to "fix" it may accidentally invalidate your child's experience.
• Asking your child if they want you to give them some alone time, sitting with them without talking about the situation, or having a conversation about their experiences. Oftentimes after a child is able to independently process their emotions, they are more open to sharing with others.

Seeking counseling or therapy

Receiving support from a psychologist, therapist, clergy member or other culturally appropriate leader within our health system or in your community can be beneficial for kids and families. At Children's Health, our psychosocial team can support kids, siblings and parents – separately and together. Having access to these services separately can make families feel like they have a safe space to not worry about burdening each other or hurting each other's feelings.

"Sometimes we'll see a patient who says 'I really need a break from my parents, they're in my room 24/7,' or the parent says 'I really want to go home and take some time, but I feel so guilty and I'm afraid my kid will be mad at me,'" Dr. Germann says. "We can help them recognize that everyone needs space, and that it's okay to need some time apart — and even help family members practice how to best communicate their needs."

Psychosocial services give families access to professionals who have a lot of experience supporting families going through cancer and can offer an open and validating place to express their thoughts, feelings and fears.

"A lot of people think they have to have a mental health condition or an exceptionally difficult situation to see a psychologist, and that's a myth I'd like to debunk," Dr. Oppenheim says. "We exist to work with families who are going through all the emotions that are normal and expected during these times. You don't have to be going through depression or anxiety to benefit from professional help."

Accepting support from your community

Families often receive an outpouring of support from their community when a child is diagnosed with cancer. But sometimes families may not receive the support they most need — and end up having more casseroles than they can eat and feeling obligated to accommodate visitors who their child isn't ready for.

"Families have different needs. And even within a family, different family members might have different preferences," Dr. Germann says. "It's important for family members to know what kind of support would be most helpful for them."

You may need to help eager family members and friends know what you need most — or remind them that you may need ongoing support, not just support in the first few weeks. Dr. Germann recommends:

• Giving supporters a specific job or task. Can they drive a sibling to soccer practice or drop off a meal on a specific day?
• Asking for ongoing support from people who want to help longer-term. Could they drive a sibling to soccer on Wednesdays or drop off a meal every Thursday for the next two months?
• Sharing what you need more or less of. If your family has enough meals in the freezer but has been having trouble getting the dog walked and fed, could they feed and walk the dog instead of bringing more meals?

Families can also use platforms like CaringBridge, to create a journal about their cancer experience and share it with the people of their choice. This type of platform can keep loved ones in the loop, without a family having to communicate directly with every individual to everyone in their community.

Supporting your child with school

Each child's ability to attend and keep up with school will be different. Children's Health patients have access to programs that help kids keep up with their schoolwork as much as possible.

School services liaisons work with the child's oncologist, school and teachers to identify what type of educational programming and support is necessary for each child and at various stages of their treatment.

We also have child life specialists who can educate our patients' peers about what it's like to have cancer and why they have to be in and out of school during treatment.

"Our child life specialists can go to the school and talk with the class about what your child is going through, and how they can be a really good friend to your child during this time," Dr. Oppenheim says.

The psychosocial team also helps prepare kids and teens to advocate for themselves.

"During and after cancer treatment, a child may look different due to hair loss, use of certain medical equipment, or changes after surgery," Dr. Oppenheim says. "For example, a bone cancer patient may have a limb difference after surgery. We can help them prepare to say things like, 'I see you looking at my leg. I had cancer, but I'm okay now.'"

Finding support groups

Many families benefit from support groups and resources including:

• Alex's Lemonade Stand and Super Sibs
• Cancer Support Community North Texas
• Elephants and Tea, a platform that shares stories and hosts events to support adolescent and young adult (AYA) cancer patients
• Stupid Cancer, a group dedicated to building community for AYA patients

Attending camps

There are many specialized camps for children and families living with cancer. Camps provide an opportunity to do typical camp activities, such as fishing, swimming, or a ropes course in a medically supervised setting. It is comforting for many families to know that their child is in good hands and will have access to any medical attention they need while also getting to have a typical childhood experience. It also gives them the chance to connect with other kids and families going through similar experiences.

"For example, kids with limb differences as a result of cancer can go to these camps and have the chance to climb a wall or shoot a bow and arrow in a way that may not be available at traditional summer camps," Dr. Oppenheim says. "I cannot say enough good things about how beneficial these camps are for kids and families."

Our patients have access to a variety of camps. Learn more about camp offerings and ask your child life specialist about camps for kids, teens and families.

Learn more

At Children's Health, our goal is not just to cure a child's disease — we do everything in our power to help them have a healthier future. Learn more about the Pauline Allen Gill Center for Cancer and Blood Disorders.