8 things I learned as a pediatric cancer caregiver

When we noticed a swelling on Sawyer’s jaw, we never imagined he had rhabdomyosarcoma, a rapidly growing tumor that caused a significant malformation of his jaw on the left side of his face. But that’s exactly what he had.

At age 2, Sawyer underwent 43 weeks of chemotherapy and 28 days of proton therapy. During that time, Sawyer learned how to communicate with doctors and nurses. He could describe his pain and feelings. He learned to try and request new food choices that he could tolerate, and he gained the ability to sleep anywhere. We spent hours and days at MD Anderson Proton Therapy Center and MD Anderson Children’s Cancer Hospital. Their facilities became Sawyer’s school, playground and our second home.

Here are eight things I learned that helped me through those difficult days.

Have a parking plan. Get directions ahead of time. Find your favorite parking garage and floor. Park there every time you go for appointments or hospital stays. That is one last thing to remember and will lessen the stress when you know exactly where to go.

Make connections. Make friends with the front desk staff. Call ahead to let them know you’re running late or arriving early.

Empower your child. Teach your child to understand their diagnosis and be able to politely tell strangers, “Yes, I have cancer, but I don't feel like talking about it right now.” 

Advocate for your child. Don’t hesitate to ask your care team for ways to make your child's treatment more comfortable from home. Maybe there's something simple you can do that you haven’t tried yet.

Plan for comfort and entertainment. Bring something from home to appointments -- a blanket, pillow or anything that brings your child comfort. Always carry a phone charger and change of clothes. Keep an overnight bag in your car for your child and yourself. Bring a laptop or tablet for entertainment to watch movies and their favorite videos. This can reduce stress and help you and your child relax.

Speak with a counselor. Going through cancer treatment takes a tremendous toll on a family. Take advantage of the support programs and patient support at MD Anderson. Ask for help from a licensed clinical social work counselor. Emotionally, we benefited from the family counseling services that were provided. As a family, we spoke every other week with our family clinical psychologist, Dr. Rhonda Robert. Dr. Robert helped Sawyer through play therapy. She talked with us about other stressors affecting our family as a result of Sawyer’s diagnosis and the challenges of caring for a child with cancer. 

Set up a support network. Friends and family want to help, but they may not know how. Tell them what you need. Use websites and social media to coordinate support. There are websites where you can easily coordinate for friends and family to bring you meals, pick up kids or dry cleaning. Better yet, let a friend or family member set this up for you.

Take care of yourself. Remember to take a mental break when you need it. Ask for a child life specialist to come to the room if you need a mental break. Talk to other parents in the waiting room, join an online support group, or participate in Facebook groups, online forums, etc.

In the four years since Sawyer’s diagnosis, a lot of people have told us, “He is so young; I hope he won’t remember.” To that I say, “I hope he does! I hope he remembers everything!”

What Sawyer has gone through is extraordinary. It has changed our whole family. I don’t want him to forget it. Some people may say it was traumatic; others may say it was inspiring.

But as our family has learned, pediatric patients and caregivers can get through absolutely anything.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.