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 Charlie was eight weeks old, I noticed his legs had become limp. We took him to the ER and discovered he had a large tumor compressing his spinal cord causing lower body paralysis.

Charlie had emergency surgery two days later to remove the tumor, with hopes of saving his leg function. A biopsy revealed the diagnosis: primitive myxoid mesenchymal tumor of infancy (PMMTI). This is an incredibly rare sarcoma that affects infants.

We learned that Charlie would need proton therapy. We sent Charlie’s medical records to several centers around the country. Over the phone, we discussed with each of them their plan for Charlie.

Choosing MD Anderson for proton therapy

Charlie’s case was difficult because he hadn’t developed the protective layer around his spinal cord called the myelin sheath. This meant radiation could potentially paralyze him completely. He could lose the opportunity for his spinal cord to regenerate. The dose and the location of the radiation on Charlie’s back was extremely important.

We chose MD Anderson because of its great reputation, proximity to our home in New Orleans, and because of radiation oncologist Dr. Arnold Paulino. When we spoke with him, Dr. Paulino was cautious and collaborative in deciding what dose to give Charlie that would save his nerves.

Once we arrived at the MD Anderson Proton Therapy Center, the staff and nurses were so kind to us. They loved Charlie and were so sweet to him. They knew his name and brought out toys for him to play with when we arrived.

Undergoing treatment for primitive myxoid mesenchymal tumor of infancy

After surgery, Charlie received chemotherapy and proton therapy. To prevent infection, we kept Charlie’s mouth rinsed with a special mouthwash and kept his central line flushed.

Charlie was sedated every morning before he received proton therapy. I would set an alarm for 2:30 a.m. to give him his last bottle before fasting began. Nurses Leo Flores and Yvette Rosenthal always made sure we felt comfortable and let Charlie wake up naturally from anesthesia each day. Child life specialist Laura Oncale was always ready to greet Charlie in the hallway with a toy. Charlie began to expect her each morning and would scream and clench his fists with excitement when he saw her. After 28 treatments, Charlie completed proton therapy in October 2019.

Facing the side effects from PMMTI treatment

During chemotherapy, Charlie experienced side effects such as appetite loss, fatigue and constipation. He also suffered from sepsis. This was scary and difficult. Around week four of proton therapy, Charlie had some skin irritations. We applied ointments and bandages to protect his skin. Although the burns looked painful, Charlie didn’t seem bothered by them. Due to the nerve damage to his bowels, he remains on daily laxatives. On Dec. 9, 2019, Charlie completed chemotherapy.

We are so grateful that Charlie’s movements have improved since he completed proton therapy. One of our greatest fears was that he would become paralyzed completely from the radiation. Thanks to the great doctors at MD Anderson, that has not been the case.

It’s been a year since his last treatment and Charlie is now two years old. He continues physical therapy three times a week near our home in New Orleans, Louisiana. He has partial lower body paralysis, but when he was first injured by the tumor, he was totally limp. Now he is using a posterior walker and can walk well. Sometimes he even runs. We are hopeful that one day he will walk independently.

Finding connection and gratitude after treatment for PMMTI

We feel so much joy seeing Charlie grow and progress as a smart and healthy toddler. Even though it is sometimes difficult to watch him with his disability, I have found acceptance and joy in the life we have.

I found fulfillment and support during Charlie’s treatment by creating the first support group on Facebook for those affected by PMMTI. Having someone to talk to that knows the unique experience you are going through is a great comfort. Always remember that treatment will end, and life does get better.

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

In Sept. 2019, I discovered a rock-hard bump on my son Logan’s chest. The next day, an X-ray revealed a soft tissue mass on his chest. A CT scan showed two additional masses on his chest. By Oct. 2019, a biopsy confirmed a Ewing’s sarcoma diagnosis.

Logan did not show the genetic markers of Ewing’s sarcoma, but he had several gene mutations. I started researching as much as I could. I wanted to know everything I could about his diagnosis.

A week later, Logan began six rounds of chemotherapy at our local hospital. He handled chemotherapy very well. But he experienced side effects, including neutropenia, mouth soreness and fatigue. 

In Jan. 2020, Logan underwent a full thoracotomy to remove the tumors from his diaphragm. During surgery, doctors discovered multiple nodules throughout his chest cavity. They performed a partial pleurectomy, along with an ablation of the visible nodules. After surgery, he was up and walking by the fifth day. And by the seventh day, he was off pain medication.

In March 2020, he underwent another surgery for a chest wall resection to remove three partial ribs. Then he received a full pleurectomy of the remaining pleura of his chest wall. Logan was amazing and kept a positive attitude. After surgery, he said, "This surgery was much easier than the last!"

Choosing targeted radiation therapy at MD Anderson

After speaking with multiple specialists, we knew it was vital for Logan to receive radiation to the tumor sites. Since the primary tumor was on his rib and several other tumors had been attached to his diaphragm, we needed a targeted radiation plan. It was important to keep his healthy tissues and organs unharmed.

That’s when we met Dr. Arnold Paulino at the MD Anderson Proton Therapy Center. Dr. Paulino took every approach to ensure that Logan’s radiation treatment plan would be the best overall.

Starting on May 12, Logan received 23 treatments of volumetric modulated arc therapy (VMAT) to his hemithorax. That was followed by seven proton therapy treatments. To minimize skin irritations from the radiation, I applied aloe vera infused with manuka honey, along with heavy amounts of ointment, to his skin. He also took a shark liver oil supplement to help reduce other side effects from radiation, such as nausea and to improve his immune system.

Logan’s radiation therapists made sure he was comfortable. They always greeted him with encouraging words and got to know him. They asked him questions to help him open up. Logan played video games and created animations to redirect his focus.

In Sept. 2020, we found out Logan is cancer-free. His lungs look great and show no damage from radiation. He can exercise and keep active like any other 10-year-old boy.

Coping with your child’s cancer treatment

My advice to other parents is to ask questions. Always look for ways to help your child through the process. As scary as it is to have a child with cancer, it is even scarier when issues arise that you are not aware of. 

Communication with your child during treatment is key. Keep a care kit available for needs such as sores, rash, open wounds, fatigue or nausea. Stay prepared by speaking with your care team regularly to identify possible situations that could arise.   

Try to keep your spirits up. We joke and laugh a lot. As hard as life is right now with quarantine, it’s about being together with family, and embracing the positivity that life has to offer.

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