JaNiece Saladin, who was breastfeeding Randall, noticed that their 3-month-old wasn’t eating as much as he should, that he wasn’t gaining weight, and he was also experiencing uncontrolled eye movements. After a few months of trying different formulas and making multiple trips to his pediatrician and the emergency room, the Saladins knew something wasn’t right.

Randall’s pediatrician referred him to a gastroenterologist who advised the Saladins to increase Randall’s caloric intake and recommended inserting a G-tube, a type of feeding tube.

But nothing seemed to help. The Saladins, who were living in Greenville, North Carolina, at the time, sought a second opinion at Duke, where they were told one of three things could be wrong with Randall: his heart, kidneys, or brain. JaNiece Saladin said she knew right away that it was his brain.

“As soon as the doctor said that my heart dropped,” JaNiece Saladin said. “I felt like I immediately knew, even before we got the MRI.”

An MRI and biopsy in February 2017 revealed that JaNiece Saladin’s instinct was right. At 8 months old, Randall was diagnosed with a brain tumor.

The devastating news rocked the family. JaNiece Saladin was only one week into her first nursing job, and Randy Saladin had just left the Army and was starting classes at a community college. “It was like our whole lives were turned upside down,” JaNiece Saladin said.

THE SUPPORT OF A VILLAGE

Immediately after receiving the devastating diagnosis, the Duke Pediatric Neuro-oncology Program team was there to help guide the family. On the night they received the news, both Pediatric Nurse Practitioner Bridget Archambault, CPNP, and Nurse Navigator Julianne Rogers, RN, CPN, were by the Saladin family’s side, helping to explain what the diagnosis meant and what would come next.

Even though JaNiece Saladin was a new nurse at this point, Rogers said there was still a lot for her and the family to learn. “In the beginning, it’s a lot of education, and I help families answer questions that they didn’t know they needed to ask,” Rogers said.

Randall had a tumor called a pediatric low-grade glioma, which is the most common brain tumor in children and adolescents. According to the American Brain Tumor Association, low-grade gliomas account for about 33% of brain and spinal cord tumors in children and adolescents. The tumors are not malignant, and the 10-year survival rate for children with these tumors is more than 90%.

“It’s a tumor that’s generally not life threatening, but Randall is at a high risk of vision loss, memory problems, weakness, and problems with hormone or endocrine function,” said Randall’s neuro-oncologist, Daniel Landi, MD.

CARING GUIDES AND COORDINATED CARE

A team approach has been key to helping Randall and other children like him. The pediatric neuro-oncology team is made up of four attending physicians, including Landi, a pediatric nurse practitioner, a nurse navigator, and a social worker. The close-knit team meets once a week to coordinate care and discuss treatment options.

Rogers, the nurse navigator, schedules appointments for each patient, making an effort to coordinate as many appointments as possible on the same day to avoid multiple clinic trips. In addition to educating the families about their child’s condition, she is only a text or phone call away whenever questions arise. She helps the families navigate their way through the scariness and uncertainties of emergency room visits and empowers the parents to become advocates for their children in health care settings.

Providers from many other departments play a crucial part in caring for brain tumor patients, including neurosurgery, neuro-radiology, pediatric radiation oncology, and pathology. In Randall’s case, his endocrinologist and neuro-ophthalmologist also follow him closely.

Overall, the team’s focus is to help families through the most difficult time of their lives.

“These families are facing a battle that none of us would want to face,” Archambault said. “If we can do a little bit to offer them hope, to give them encouragement, and hopefully make a difference in their child’s prognosis, then that’s what we’re here for.”

A TUMULTUOUS VOYAGE

Randall’s tumor is in a part of his brain that could affect his vision, making it too dangerous to remove. So, the focus has been on treating it with chemotherapy to keep the tumor from growing.

Randall went through five different chemotherapies before his providers found one that worked, called trametinib. At the time, liquid trametinib was not commercially available, but he was able to get it through compassionate use because he was too young to swallow pills.

For two years, Randall responded well to trametinib. The tumor shrunk. But the treatment wasn’t without side effects. Randall experienced skin issues, nausea, broken bones, and ingrown toenails that were so severe they required five surgeries.

“The overall survival rate for pediatric low-grade glioma doesn’t tell the story of all the challenges that these patients face.” Archambault said.

Managing life around that time was hard for the family. Randall’s father recalls staying up all night for feedings and to administer Randall’s five medications.

“Life was rough, very rough in the beginning. There was a lot of change,” Randy Saladin said. “I was getting out of the military. My wife was just finishing school and going into her career. Then you add a sick child with a brain tumor that needs around-the-clock care. It is tough.”

The family was making the two-hour drive from Greenville to Durham twice a week. Eventually, they decided to make life a little easier by moving to Raleigh in 2019, and the Saladins each got jobs at Duke; she is an operating room nurse at Duke Ambulatory Surgery Center, and he is a sleep tech at Duke Raleigh.

Through it all, the Saladins have focused on keeping Randall happy and enjoying life, often letting him pick out a toy after each appointment. He also participated in Make-A-Wish, which allowed him to enjoy a trip to Disney World with his family.

Sarah Davis, LCSW, a clinical social worker for the Duke Pediatric Neuro-oncology Program, helped the Saladins find the resources they needed during the tough times.

Her role as a social worker on the team involves connecting families with organizations that offer resources and emotional support.

One of the organizations, Destination Hope, which is a nonprofit, helps families of children with pediatric brain tumors with travel, living, and medical expenses, no matter their financial situation. Help can include funds to stay in a hotel while their child is receiving care, money for gas, or help with plane tickets for families who must travel long distances to Duke.

Davis said the support from Destination Hope “takes away the question, ‘Can I afford to go to Duke?’ It takes the burden off the families.” She added, “It also gives Duke that opportunity to see children right now as opposed to six weeks from now.”

ACCESS TO A NEW HOPE

For a while, things were going so well for Randall that he was able to stop treatment, and the tumor remained stable. The family celebrated with a party. Life finally felt a little more normal — at least as close to normal as possible.

They were sad to learn in March of this year that the tumor had started to grow again. Randall would need to go back on treatment.

But there was promising news. A new oral targeted therapy specifically for patients with Randall’s type of tumor had recently become available. Randall started the therapy, called tovorafenib, right before it was approved by the FDA in April. It is the first and only type II RAF kinase inhibitor for RAF-altered pediatric low-grade glioma.

The drug was studied in a multi-center clinical trial called FIREFLY, which included Duke. Of the 137 patients enrolled, 10 were from Duke.

Having access to such studies that may not be available elsewhere and the drugs that are eventually made available because of them is a benefit of being treated at the Duke Pediatric Neuro-oncology Program.

Duke is part of the Pacific Pediatric Neuro-Oncology Consortium, an international consortium dedicated to bringing new therapies to children and young adults with brain tumors. Duke also participates in the Collaborative Network for Neuro-oncology Clinical Trials (CONNECT) consortium, which conducts clinical trials in high-risk pediatric brain tumors to investigate combinations of novel drugs with traditional therapies.

CONTINUING TO THRIVE

Fortunately, Randall has responded well to tovorafenib. He started third grade in August and no longer needs a G-tube. He enjoys all his favorite activities, including going on walks with his family, which now includes his two younger siblings, Cole, 4, and Andreas, 1.

The most noticeable side effect of tovorafenib is that it has turned Randall’s hair white. An 8-year-old with white hair may get a few double-takes, but Randall isn’t fazed by it. “I love it,” he happily shares. His parents have embraced it as well; JaNiece and Randy Saladin both dyed their hair to match Randall’s. 

Randall’s providers will continue to monitor him for side effects and keep an eye on his vision. He will have monthly EKGs. “We’re hopeful that with continued treatment, he will continue to thrive,” Landi said.

The Saladins are grateful to Duke for saving their son’s life, crediting many of Randall’s positive outcomes to the care team’s willingness to listen.

“If it wasn’t for Duke, we would have just put the G-tube in, and we would have never known about the tumor,” Randy Saladin said. “We took him to get that second opinion, and they listened to everything we had to say. They explored every option to figure out the problem.”