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Charlie's Story: St. Louis Children's Hospital's First Proton Therapy Patient

Charlie's mom and nurse get him situated before proton therapyIn late November of last year, Julia and Jake North had their lives turned upside down when they received news that the oldest of their 6-year-old triplets, Charlie, had a brain tumor.

Within weeks, he had surgery to remove the tumor at a hospital in Urbana, Ill., and began a multidisciplinary treatment plan at St. Louis Children’s Hospital.

As part of his treatment plan, Charlie would become the first pediatric patient to receive proton therapy on the medical center campus. Proton beam therapy is a highly accurate form of radiation therapy used to treat tumors near vital organs with greater precision, minimizing exposure to other organs and healthy tissue.

The family’s journey to St. Louis, three hours from their home and family farm in Paris, Ill., began around Thanksgiving, when Charlie began complaining of constant headaches that very little would help.

“It was horrible because he would cry at least once a day, and the only thing that would help was when he went to sleep,” Julia says. “When he woke up, he was like a new kid, but then the headaches would return.”

In the hopes of finding relief, Jake drove him to their pediatrician’s office one hour away from home. During that appointment, Charlie was given medication for a cough, but the doctor was unable to determine what might be causing his headaches.

All during the Thanksgiving break, Charlie continued to complain of headaches while trying to enjoy the time off from first grade with his siblings, Lily and Grant.

But by the first day back at school, Julia, who is also the school secretary, knew that Charlie still wasn’t feeling like himself. The next day, she took Charlie to the pediatrician, and within hours, the North family heard the devastating news.

During Charlie’s appointment, his doctor decided to send Julia and Charlie to Carle Foundation Hospital in Urbana, Ill., for a CT scan in the hopes of ruling out anything more serious.

“They read the CT scan right away, and my pediatrician called me and said, ‘I hate to tell you this over the phone, but Charlie has a mass on the back of his head,’” Julia recalls. “I called my husband and our parents, and the next thing you know, we were meeting with the neurosurgeon, Dr. John Wang, who knew by then that Charlie had a tumor and he was admitted to the hospital that day. He was really wonderful because he was a dad, too.”

After several days in the hospital, Dr. Wang told the family that he believed Charlie had a brain tumor called a medulloblastoma, the most common form of brain tumor in children.

Charlie had surgery on Dec. 9, when Dr. Wang removed 100 percent of the tumor, but he told the family they needed to go to a pediatric hospital for further treatment.

The Norths, who live between Chicago and St. Louis, did their share of online research, and ultimately and ultimately chose St. Louis Children’s Hospital.

Charlie came home following his surgery on Dec. 18, and by the next day, he was at St. Louis Children’s Hospital, where he met with his oncologist, Dr. Karen Gauvain.

“We had no idea how long treatment would last, and then we were told it would be 55 weeks, more than a year,” says Julia, who would learn that Charlie would need radiation and chemotherapy. “It was pretty overwhelming.”

Fortunately, the Norths have family and friends who are helping them navigate and make sure they can make the trips back and forth to St. Louis. When needed, Julia and Charlie stay overnight at a local hotel often accompanied by a grandparent, so dad can stay home to continue operating their farm and caring for their other children.

Although the Norths hoped to start treatment right away, Charlie had a setback when he began having headaches again in early January. Following an MRI, it was determined that he had hydrocephalus. Pediatric neurosurgeon Dr. Mathew Smyth inserted a shunt to relieve the pressure and drain the extra fluid from around the brain.

Charlie’s treatment plan began with a series of cranial/spinal radiation treatments, along with chemotherapy, in mid-January.

Kling Center staff welcome Charlie to proton therapyOn February 10, Charlie began proton beam therapy, becoming the first pediatric patient at St. Louis Children’s Hospital to receive this treatment at the S. Lee Kling Proton Therapy Center. St. Louis Children’s Hospital offers the treatment in partnership with the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine. It is the only proton therapy center in Missouri.

Dr. Stephanie Perkins hugs Charlie's mom after the end of his final protein therapy treatment“The proton is a major blessing for Charlie. Since he is so young, we were worried about what might be affected with radiation,” Julia says. “We’re so grateful it’s available and can target just the tumor.”

St. Louis Children’s Hospital radiation oncologist Stephanie Perkins, MD, has been caring for Charlie throughout his treatment.

“Charlie is my first child and my first patient to use the proton beam, and he is doing really well,” she says. “The proton beam allows us the ability to treat the area that requires radiation, targeting the tumor bed, and eliminating radiation to the area around it.”

He receives the treatment Monday through Friday. To help alleviate extra movement and assist with alignment, Charlie wears a specially made immobilization mask and is administered anesthesia similar to sedation given to children for MRI, Dr. Perkins explains.

Dr. Perkins with the North family

“Charlie is very quiet during our visits, but his mom reports that when he goes home, he’s active with his siblings and doing well,” she says. “Our expectation is that he will have a good prognosis and that proton therapy will help decrease the risk of long-term effects.”

For a family like the Norths that already has to travel a distance from home to see their care team and receive treatment, having the proton therapy center on campus is invaluable, Dr. Perkins says.

“In some cities, the proton beam is not near the children’s hospital, and children often have to travel by ambulance for treatment,” she says. “For our patients, whether inpatient or outpatient, they are here and close to their team. It’s great to be integrated with our hospital.”

Charlie marked the completion of proton beam therapy in March with a bell ringing and donuts. He will be back in early April to begin a new chemotherapy treatment, Julia explains.

Charlie sits with his dad after his final proton therapy treatment“Charlie is doing so well, but we do wonder what is going on in his head. He’s an outgoing kid, but he can be quiet around strangers,” she says. “We have found out that he is always listening and hears what is going on.

“We’re so grateful for everyone here at St. Louis Children’s Hospital. It’s been wonderful, and everybody is so caring,” she adds. “We see all of these sick children, but they are happy because of this place and the people here, it makes us want to give back, and we will.”

 

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