Pediatric Brain Cancer: Julian’s Story
Patient Story Highlights
- At 3 weeks old, Julian was diagnosed with bleeding in his brain, likely caused by a tumor.
- After an uncommon and incredibly risky surgical procedure, Julian’s parents learned that he had brain cancer, specifically an aggressive cancer: high grade glioma.
- At 7 months of age, Julian had another operation to remove the remains of the chemo-shrunken tumor.
When 3-week-old Julian Letchworth arrived at Johns Hopkins Children’s Center’s emergency department on a Saturday in August, his prognosis was beyond dire. Emergency brain surgery might save his life — temporarily — if he survived the procedure.
“I remember having a discussion with his mother, telling her that it was a bad situation and we would do our best,” says neurosurgeon Eric Jackson, who operated on the tiny baby that day.
Julian had been diagnosed with bleeding in his brain, likely caused by a tumor. The goal of the surgery was to remove blood clots, control the bleeding and stabilize the young patient.
Brain surgery on a 3-week-old baby is uncommon and incredibly risky, partly because immature brains bleed more than adult ones, and such a small person can’t afford to lose much blood, explains Jackson, who primarily operates on children but rarely ones that young.
Julian survived the four-hour surgery, but a biopsy of tissue removed during the procedure confirmed the fears of Julian’s family and clinicians: The newborn had brain cancer, specifically an aggressive cancer: high grade glioma.
Julian’s condition was rare. Johns Hopkins pediatric oncologist Eric Raabe says he may see 40 to 50 patients each year with pediatric tumors, but maybe just one with a cancer that developed in utero.
He and fellow Johns Hopkins pediatric oncologist Sarah Watt solemnly broke the news to Julian’s parents, Emily and Jordan, who live in Elkridge, Maryland. The doctors explained that the tumor was aggressive and would re-grow after the surgery. They suggested palliative and hospice care to help manage the symptoms caused by the tumor and potential treatment.
A few days later, after reviewing the tumor’s appearance with pathologists, the oncology team proposed a chemotherapy regimen.
Emily and Jordan’s emotions were almost beyond comprehension.
“We had to make the decision to go into treatment knowing there was a possibility he wasn’t going to make it,” says Emily. “I knew the goal of the chemo was to extend his life, not necessarily to save his life.”
For Julian to have any hope for survival, the regimen would have to be just the right combination of chemotherapy medications, and he needed to respond well to them. His parents and care providers would have to be vigilant, because even a tiny infection could be deadly, because the chemotherapy would torpedo his white blood cells. And even if the treatment succeeded in shrinking the tumor, Julian would need a future surgery to remove remaining malignancies.
That was more than three years ago.
Today, Julian is a sturdy, impish toddler who greets new friends with an enthusiastic, “Hi,” punctuated by a grin that lights up his face. The cancer is gone, and he is a preschooler.
While enjoying lunch recently with his mother and his grandmother, Danette Riviello, at the cafe in Johns Hopkins Children’s Center, Julian was active and curious before exploring the adjoining courtyard.
He is receiving help to overcome some speech delays, but “he’s somebody who has the capacity to have an almost complete recovery,” says Raabe, associate professor of oncology and pathology at the Johns Hopkins University School of Medicine. He is the rare child who enters and leaves hospice care.
"We had to make the decision to go into treatment knowing there was a possibility he wasn’t going to make it."Emily Letchworth
‘I Knew It Wasn’t Going to be Good’
Soon after Julian was born on Aug. 8, 2020, at Howard County General Hospital (now Johns Hopkins Howard County Medical Center), he displayed an unnerving habit of failing to breathe until someone gave him a shake. An ultrasound showed he had a brain bleed that was causing seizures, and the infant was transferred by ambulance to the Children’s Center.
“I knew it wasn’t going to be good when a doctor and a social worker came in to tell us” the ultrasound findings, recalls Emily, a school psychologist in Baltimore County. “I just started crying.”
By Aug. 19, Julian had been stabilized with anti-seizure medications, and Emily and Jordan brought their fragile newborn home. They recognized about a week later that he needed to return to the Children’s Center.
“He was screaming and throwing up and more or less passing out,” recalls Emily.
They called 911, and while Jordan rode with Julian in the ambulance, Emily called her parents, who were on their way to the beach, and asked them to come back. Jordan’s mother, Leslie Tucker, went to Baltimore too, from Virginia.
This was during the height of COVID-19 lockdowns, and only one parent at a time was allowed in the hospital due to safety reasons. Emily and Jordan took turns being with their baby, while the other sat in a parked car with Julian’s grandparents.
Julian started chemotherapy when he was 7 weeks old, and continued it for a year. Based on regimens that were known to work for children with aggressive brain tumors who are less than a year old, Raabe and Watt devised a custom regimen for Julian that alternated between cycles of cyclophosphamide/vincristine and carboplatin/temozolomide/vincristine. Switching between regimens would keep the cancer off balance, Raabe explains.
The medications were administered through a central line once per month. Each time, Julian stayed in the hospital for five days or so to monitor for infections while his white blood cell count dropped.
During his first 13 months of life, Julian spent 97 nights in the hospital, says Emily. He was in the Children’s Center for his first Halloween and his first Christmas. The good news during the chemotherapy was that it was working.
Nurses and doctors “really loved him,” Emily says. And, though he had every reason not to, Julian smiled a lot.
“He tolerated chemo really well and tolerated the central line really well,” says Watt, a research and clinical fellow in pediatric oncology.
At 7 months of age, Jackson again operated on Julian, this time to remove the remains of the chemo-shrunken tumor. When pathologists looked under the microscope, they saw a very different tumor that was mostly dead, Raabe says, noting, “This was very encouraging and led us to continue with the therapy to make sure we kept the pressure on any surviving tumor cells.”
When he was 13 months old, Julian finished chemo, and in March 2022, “they got a clear scan and it started to sink in that we had turned a corner,” says Emily.
These days, Julian gets checked every six months. He will eventually have surgery to replace a missing piece of his skull. He still takes anti-seizure medication because of the risks posed by the tumor location and surgery, but he hasn’t had a seizure in years and is being weaned off the medicine, says Watt.
“If you saw him at the playground, you might say he doesn’t have as many words as some his age, but he’s talking and he’s going to catch up,” says Raabe.
“We don’t know what the future holds, but things are looking good right now,” Raabe adds. “And it’s because of our pathologists, because of Dr. Jackson, because we gave him a customized chemo plan and because Julian’s parents reacted quickly and saw that he needed help. It’s not just luck. It’s all the decisions that people made along the way.”