Benefits of proton therapy for childhood cancer
Proton therapy is an excellent treatment option for children, adolescents and young adults with cancerous and non-cancerous tumors that can be treated with traditional radiation. Proton therapy may limit the radiation exposure to healthy, growing tissue in pediatric cancer patients. Because protons can be precisely controlled, pediatric proton therapy is ideal for tumors located near growing tissues in the spinal cord and brain, eyes, ears or mouth.
Children with tumors in the brain, head, neck, spinal cord, heart, lungs and other areas that are sensitive to radiation can benefit from treatment with proton therapy because physicians can target treatment directly to the tumor area. This limits the possible damage to children whose bodies are still developing.
Types of childhood cancer that may be treated with proton therapy include:
- Brain tumors
- Ewing’s sarcoma
- Intracranial germ cell tumors (germinoma)
- Optic pathway/hypothalamic glioma
- Optic Nerve Tumors
- Primitive neuro-ectodermal tumor (PNET)
Leaders in research and treatment of childhood cancer
At the MD Anderson Proton Therapy Center, we are world leaders in the research and treatment of childhood cancer with proton therapy, an advanced form of radiation precisely targets tumors while sparing surrounding healthy tissue.
Our pediatric team includes physicians, nurses, radiation therapists and other cancer experts that specializes in treating children with cancer. From its inception, the MD Anderson Proton Therapy Center was designed with children and their families in mind – from our child-friendly waiting and play areas to our special, early appointment times for many of our young patients.
We're here for you
If your child’s type of tumor is not listed, please contact the Proton Therapy Center for more information. Because the center is part of one of the nation’s top cancer centers, we treat more types of cancer in children with proton therapy than any other center.
Our multidisciplinary team of pediatric cancer experts evaluates each individual child’s specific type of cancer and recommends the best course of treatment.
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
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
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.
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
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.
Most tumors in children are treated with surgery, chemotherapy and radiation therapy. While traditional radiation therapy with X-ray beams can be effective, it also can produce documented long-term side effects in some children, such as a decrease in bone and soft tissue growth in the treated area, hormonal deficiencies, intellectual impairment, including neuro-cognitive deficits, and secondary cancers later in life.
The ability to precisely target tumors makes proton therapy ideal for treating pediatric cancer. It provides accurate treatment of tumors near or within sensitive organs while limiting radiation exposure to healthy tissues, which is vital in children whose bodies are still growing and developing. This may reduce side effects during treatment, often allowing children to better tolerate proton therapy. Additionally, studies show that proton therapy can also result in fewer late effects from treatment, a major concern among physicians and families when a child – especially a very young child – is undergoing radiation treatment. This includes potentially fewer issues with brain development for children who have been treated for brain tumors.
Though treatment can vary for each patient’s specific case, most children are treated daily, Monday through Friday, for five to six weeks. Treatment can take anywhere from 30 minutes to 1 ½ hours daily, depending on whether the child is sedated.
MD Anderson pioneered pencil beam scanning proton therapy, also called spot scanning, and has extended its benefits to children with cancer.
Pencil beam proton therapy is an even more precise form of proton therapy treatment; it can be directed to move throughout the tumor’s depth to "paint" the treatment volume with spots of radiation, conforming to the shape of the tumor and delivering thousands of spots of radiation in just a few minutes. This can provide even greater benefits to young patients with brain or other types of tumors, especially those that are oddly shaped or within or near critical structures or vital organs in the body.
MD Anderson Proton Therapy Center is the only center in North America and one of three in the world to use pencil beam scanning proton therapy to treat both pediatric and adult patients.
At MD Anderson Proton Therapy Center, we have a dedicated pediatric team that includes radiation oncologists, nurses, therapists, social workers, a child life specialist and other cancer specialists – all experts in treating children with cancer.
We also have a dedicated pediatric anesthesia team to provide anesthesia to very young children who may require daily sedation to help them remain still for their proton therapy treatment. MD Anderson Proton Therapy Center is one of the few proton therapy centers with a dedicated, on-site pediatric anesthesia team dedicated to caring for children. The specialized, experienced anesthesia support is essential for the safety and effectiveness of proton radiation delivery.
Watch this video of Shannon Popovich, M.D., explaining what parents can expect with daily anesthetic treatments in an effort to ease any apprehensions and fears parents have about their children being put to sleep for proton therapy treatment.
At MD Anderson Proton Therapy Center, we collaborate with all of the cooperative groups for pediatric cancer, including the Children’s Oncology Group (COG) and the Pediatric Brain Tumor Consortium. Our physicians worked with COG to refine proton radiation guidelines for the organization’s protocols.Proton therapy radiation is now an acceptable form of radiation treatment for nearly all COG clinical trials that call for radiation therapy.
The Pediatric Proton Consortium Registry (PPCR) was established in 2012 to expedite proton outcomes research to assure access to those pediatric patients who can benefit the most from it. It is the most comprehensive multi-institutional radiation based patient registry in existence and unique in its scope and depth.
Registry for Pediatric Patients Treated With Proton Radiation Therapy
NCT01696721 - In previous studies, Proton Beam Radiation Therapy (PBRT) has been found to show better results in treating patients with cancer, both because there is better control of where in the body the radiation is directed and because it is associated with less severe long term side effects. However, there is limited published data demonstrating these results. The goal of the Pediatric Proton Consortium Registry (PPCR) is to enroll children treated with proton radiation in the United States in order to describe the population that currently receives protons and better evaluate its benefits over other therapies. The data collected from this study will help facilitate research on proton beam radiation therapy and allow for collaborative research. The PPCR will collect demographic and clinical data that many centers that deliver proton radiation therapy already collect in routine operations.
For more information, please contact:
Nancy Philip, MD Anderson Clinical Studies Coordinator
Because we are a part of MD Anderson Cancer Center, which has ranked as one of the nation’s top two cancer centers in U.S. News & World Report’s annual “Best Hospitals” survey for the past 25 years, our pediatric patients and their families have access to all of the resources of an internationally respected academic medical center within reach, including the Children’s Cancer Hospital at MD Anderson.
As part of the world-renowned Texas Medical Center, we have the greatest capacity for treating young patients from other major hospitals, both in our community and from around the world.
We also offer convenient, free surface lot parking at the center to help ease the burden of daily parking charges on families during treatment.
Choosing targeted radiation therapy at MD Anderson
"Communication with your child during treatment is key," says Ewing’s sarcoma caregiver Christine Pena.
Rhabdomyosarcoma cancer survivor Sawyer Hack
“Proton therapy was able to target the tumor in Sawyer’s jaw and save sensitive tissue such as his eyes and ears.”
Medulloblastoma cancer survivor Owen Langston
"Owen’s age was a huge factor in determining what type of radiation we wanted to use. Proton therapy was so focused that it was the best solution to prevent long-term side effects."
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