How proton therapy helped my son with a childhood brain tumor

My son Benjamin was born weighing only 3 pounds. He stayed in the NICU for seven months. It was challenging and financially draining. We had a kindergartener and toddler at home, while also visiting Benjamin at the hospital every day. 

When Benjamin was able to come home, he had a total parenteral nutrition (TPN) central line, an ostomy bag and a gastrostomy tube (G-tube) to receive nutrition.  

By the time he was 1, he was able to eat and have the ostomy bag and G-tube removed. Life was beginning to feel normal.  

At 2 years old, he jumped into a foam pit at a birthday party and came out holding his head to the side. When I asked if he felt hurt, he said no. I waited a few days thinking he had pulled a muscle in his neck. But the head tilt remained.  

When I took him to his pediatrician, they sent us to physical therapy. After two weeks, nothing had improved. We saw a neurologist who said he seemed happy and healthy with no other symptoms other than a head tilt. The neurologist ordered an MRI to be safe, but I remember her telling me that she did not think they would find anything.  

Before we left the hospital parking lot, I received a call saying the MRI results were in.  

A childhood brain tumor diagnosis 

That is when Benjamin was diagnosed with a type of brain tumor called a Grade 1 pilocytic astrocytoma. His oncologist at our local hospital recommended he start chemotherapy but suggested waiting on radiation therapy to give his body and brain time to grow so they could access the tumor better. 

A few months later, tests showed the tumor had grown. His care team decided to operate. Benjamin had just turned 3 years old when he underwent brain surgery. He then had two weeks of inpatient rehabilitation. This was rough on our family because we had two little girls at home. 

After six years of trying several types of chemotherapy, including two clinical trials, we were ready to try radiation therapy. I knew the tumor was still growing and Benjamin was having symptoms such as sleepiness and increased face paralysis. So, we decided to take a leap of faith, trust God and go to MD Anderson to have his tumor treated with proton beam therapy.  

Proton therapy is an advanced type of radiation treatment that uses a beam of protons to deliver radiation directly to the tumor, destroying cancer cells while sparing healthy tissues.  As a result, it minimizes side effects to prevent long-term complications. Because of the physical properties of proton beams, it is ideal for pediatric cancer patients with tumors located near growing tissues, especially in the brain, spine, eyes, ears or mouth. 

Perseverance through proton therapy treatment

In Sept. 2022, when Benjamin was 10 years old, he started proton therapy at MD Anderson under the care of Dr. David Grosshans. He had a wonderful experience at MD Anderson Proton Therapy Center. Benjamin told me it was the easiest treatment he has been through. He bonded with his care team and loved taking naps during treatment. On Nov. 4, he celebrated his last treatment by ringing the gong. 

During treatments, he did not have side effects. But after he completed proton therapy, he experienced some numbness on the left side of his body and weakness in his leg. He continues to go to physical therapy and that helps improve his strength. 

Benjamin is doing well, and the tumor is stable. He is working hard to get caught up at school. Missing school for treatment affected his learning the most. 

My advice to other parents is to bring a book and a snack to treatment. Keep a watchful eye on the patient and most of all, remember to take it one day at a time. 

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