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 my daughter, Preslie, was eight years old, I noticed that her left eyelid seemed to be a little droopy. But I never expected it to be a type of cancer called adenoid cystic carcinoma of the lacrimal gland. Her left eye just was not symmetrical with her right eye. I didn't want her to feel embarrassed about it, so I didn’t bring attention to it. Her regular eye checkups never showed anything out of the ordinary discovered.

But by the time Preslie turned 12, my husband and I noticed how much different her left eye looked. It was drooping, and she was always rubbing it. We made an appointment with an optometrist.

That appointment started out normal. Then the doctor asked to see me outside of the room. She told me that Preslie needed to go to the emergency room right away for an MRI.

I will never forget the look in her eyes as she told me this. Being optimistic and hoping for the best, we went straight to the hospital.

Undergoing eye surgery for a closer look

The MRI showed a mass behind Preslie's left eye. They told us it was a hemangioma, a benign tumor. They let Preslie go home but wanted us to see a surgeon.

The next day, a surgeon took one look at her scans and said it was not a hemangioma and needed to come out right away.

Preslie had surgery the next morning. The surgeon was not able to remove all the tumor but told us that a rush was put on the pathology report. A week and a half later, Preslie was diagnosed with a rare eye cancer called adenoid cystic carcinoma of the lacrimal gland.

Finding the right adenoid cystic carcinoma treatment plan

The first oncologist we met with gave us a very intense treatment plan. She had never treated this type of cancer before and advised us to get a second opinion at MD Anderson. But first, she wanted Preslie to start treatment that week. That did not feel right to me. I knew in my heart this wasn't the right course for our daughter.

I did some research and learned that the treatment plan she prescribed for Preslie would not have worked on her cancer. I knew we needed an oncologist that had experience with this specific cancer. A friend sent me information on Bita Esmaeli, M.D., an ophthalmologist and orbital surgeon at MD Anderson who is renowned for remarkable advances in lacrimal gland cancer treatment. I knew we needed to see her. We made plans to go to MD Anderson for an appointment with Dr. Esmaeli. Prior to the appointment, Dr. Esmaeli called to assure me not to worry and that finding the right treatment plan was the most important part.

At our first appointment, I knew that Dr. Esmaeli was the right doctor for us. She is very wise and kind. After more scans, she saw a lot of the tumor left from Preslie’s first surgery.

Preslie’s care team recommended another surgery to remove the remaining tumor and the lacrimal gland itself, followed by proton beam radiation and chemotherapy.

A second eye surgery, chemotherapy and proton therapy

On Dec. 14, 2020, Preslie underwent a four-hour surgery with Dr. Esmaeli. When I was able to see her, I was amazed at how good she looked. The recovery from this surgery was much easier. Her eye never even bruised.

After healing from surgery, we met with radiation oncologist Steven Frank, M.D. He also had experience treating this exact cancer. We knew we had the right team. Dr. Frank made us feel comfortable and put us at ease.

In January, Preslie started six weeks of proton therapy treatments at MD Anderson’s Proton Therapy Center along with five weeks of chemotherapy at MD Anderson Children’s Cancer Hospital. Preslie handled chemotherapy and proton radiation like a champ. We had wonderful experiences everywhere we went at MD Anderson. Preslie’s nurses, doctors and therapists were amazing. Everyone made us feel so at ease, even amid a pandemic.

Ringing the gong and thriving after adenoid cystic carcinoma treatment

On March 5, Preslie got to ring the gong to celebrate her last proton therapy treatment. We were so proud of her. It wasn't easy, but she never complained.

About two months after she finished treatment, we could tell Preslie was feeling back to normal. She was cracking jokes and smiling all the time. We were so glad that everything seemed to be out of her system.

Preslie returns to MD Anderson for scans every few months to check for recurrence. Even as we move forward, we can look back at our time at MD Anderson and remember some fun, happy memories. We don't look back on our time during her treatment with sadness. We are grateful to have found the right people who knew exactly what to do with her rare cancer.

Advice to parents with children facing a cancer diagnosis

I know how hard it is to learn your child has cancer. What helped me in those early days was taking a deep breath and doing some research. It can be overwhelming with so much information being thrown at you, but finding the right treatment is so important.

Be confident in your child’s care. Speak up if something doesn't feel right. You are your child's advocate, their voice. Find a place where you will be heard. For us, that place was MD Anderson.

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.