Proton Therapy for Childhood Cancers

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.

When I was 16 and undergoing treatment for a type of brain cancer called medulloblastoma, one of the best pieces of advice I got was from a nurse at MD Anderson.

Early on, LeighAnna Hutchinson told me: “Find your laugh.” It was hard sometimes, but I took her advice. I looked for every opportunity I could to laugh at what was going on. And laughing in the face of cancer was what helped me get through some hard and unpleasant experiences.

Finding humor in hair loss

One way I found my laugh was by wearing different color wigs. I lost my hair within a few months of starting chemotherapy, so my mother and grandmother bought me a ton of wigs. I had so many colors: red, pink, blue, blonde. You name it, I had it.

There were a bunch of different hairstyles, too. Some were long, and some were cute little bobs. Obviously, the wigs were purchased for me to wear. But whenever my grandmother or mom noticed I was feeling sad, she would put on one of the sillier ones. It never failed to make me smile. 

Inside jokes about bodily functions and bathroom humor

Bodily functions also became kind of funny. Sometimes during chemotherapy, I’d pass gas unexpectedly, right in the middle of a conversation. I’d usually say something like, “And that’s what I think about that.” The whole room always had a good laugh.

I also wore a button on my shirt that read, “I pooped today,” because cancer patients get asked a lot if they’re having regular bowel movements or are constipated due to pain medications. Instead of waiting for me to announce it, my doctors would just ask for the button. It became an amusing inside joke.

Sharing the cancer experience with friends

The best way I found my laugh was by sharing whatever I was going through with my friends — especially those who also had cancer.

It was like, “Oh, you threw up? Great! Let’s laugh about it. Then let’s go find a lollipop to get that taste out of your mouth.” Or, “Oh, you’re neutropenic? Great! Let’s go to The Park. I know it’s not a real park, but it’s the closest thing we’re going to get to being outside right now.”

It was fine to be angry, of course, and sometimes, I was. But I knew it was not OK to stay in my room all day, or to treat anybody badly. As long as I was laughing with my friends, I found that I didn’t let myself go down a dark emotional path. And that made my journey a lot easier.

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