For Parents, A Child Going Off Therapy Brings Both Joy and Anxiety

When her son Todd finished his treatment for Hodgkin lymphoma, his mom, Melissa, was thrilled.

But she remembers being nervous about leaving the cocoon created by her son’s care team and the other families with whom she had grown so close.

“You always had the comfort of the hospital,” Melissa said. “You knew they were looking after you. After therapy is over, you’re not getting tests. You’re not getting chemotherapy. You worry about every little fever or sickness. That’s scary.”

Fellow mom, Jenny, can relate. She felt a little uneasy when her daughter Mabry reached the end of her treatment for leukemia.

“I don’t think the worry ever totally goes away,” Jenny said. “You learn to cope with it in your own way – whether it’s prayer or talking to someone about it. Look for positive things.”

Patients, parents, and siblings also miss the friends they made with other patients and families.

Concerns about child’s health

Many parents say their chief concern during this period is that their child’s cancer will come back. As a result, any sign or symptom — a runny nose, a bruise, or a headache — can trigger anxiety.

Families have been in the habit of calling their child’s cancer care team about any concern. Now they must learn to rely on the primary health care team at home.

Parents say it can be hard to know which concern they should share with their primary health care team and which ones require a call to the cancer care team. For example, a fever is an emergency during childhood cancer treatment. But after treatment, it may only warrant a call or visit to the pediatrician.

If you have medical questions, talk to the cancer care team. Care providers can help you determine which matters you should talk to your pediatrician about and which things may be a matter for the cancer care team.

Your anxiousness should decrease over time. But it will likely never be totally gone.

Getting back to routines

Patients are encouraged to go back to school as soon as possible. Many patients attend school while still in treatment. School provides a structure to daily life that is important.

School allows children and teens to be around their peers. Participating in extracurricular activities, sports, and hobbies also provides ways for them to socialize and develop their interests.

But families are encouraged to take the necessary amount of time to make this transition back to school. Sometimes patients don’t feel comfortable going back immediately. Sometimes kids will keep up with school at home (either through homeschooling by parents or homebound services provided by school) for the rest of the year. They then start back the next school year so they feel emotionally and physically ready.

It is also good for there to be a routine at home. Parents may want to consider assigning regular chores and responsibilities. For social opportunities, parents might encourage children to invite friends over.

Changes in family dynamics

It might take time to be a family unit at home again. Every family is different.

In some cases, one parent may have been at the hospital and made most of the treatment-related decisions. The other parent may have stayed at home and run the household. In other cases, the whole family may have relocated to the city where the pediatric center was located. In some situations, grandparents, aunts, and uncles may have assumed some parenting duties. In the case of single parent households, one parent may have shouldered most of the responsibilities.

There should be an ongoing conversation among everyone involved about what home is going look like now that cancer treatment is over.

Parenting challenges

Behaviors that were allowed during treatment may not be OK now that the patient is home.

For instance, when your child had a hard time eating anything it might have been all right for them to have ice cream in the middle of the night. Or when you spend so much time waiting, several hours on the iPad may be reasonable. But after treatment is over, it is likely not acceptable.

It is important to have a family discussion about expectations. Parents are encouraged to provide a reliable structure for their children.

Set consistent limits with consequences.

Give children positive reinforcement when they do well. 

If any behavioral problems persist, reach out to your child’s health care provider for help.

Taking charge of emotional health

Often when treatment ends, people think: “Treatment is over, you’re fine.” But you may not be fine.

In some cases, parents may experience “survivor’s guilt” when their child has survived when other patients did not.

It is important to monitor your own emotional health.

Each member of Melissa’s family went through counseling at one time or another. Each had different struggles. Talking with family and friends is also helpful, Melissa said, but a counselor has academic knowledge and professional expertise to help family members deal with challenges.

“Going to counseling helped me.” Melissa said. “I realized my thoughts were normal, that I wasn’t crazy.”

Give yourself time

Counseling also taught Melissa to take time for herself, along with time with her husband to give attention to their marriage. These issues often get neglected when your child is going through cancer treatment. 

“Counseling taught me not to be too hard on myself,” Melissa said. “I felt like ‘I’m Mom I’m supposed to do all these things.’ But you can’t. Create time for yourself. Create time as a couple. Find time for each other. Give yourself some grace.”

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