Rare Leukemia and Brain Surgery by Her 10th Birthday: Haldora's Story
Haldora was treated for leukemia when she was only 2 years old. Seven years later, she faced a recurrence — this time, a tumor had formed in her brain. Haldora and her family traveled from North Carolina to MSK Kids to see pediatric neurosurgeon Mark Souweidane.
In 2010, 2-year-old Haldora was diagnosed with an aggressive type of leukemia. Her parents, Jessica and Alex, sought treatment at a hospital near their home in North Carolina. Haldora went into remission and resumed life as a happy, healthy little girl who loved to play with her twin brother, Hunt.
Then in May 2017, Haldora began having very bad headaches. A brain scan revealed a bad sinus infection as well as something far worse: a mass on her brain stem.
“We knew that a brain tumor after leukemia was bad,” Jessica says. “Our team in North Carolina referred us to the best pediatric neurosurgeon in the area, but he said he had never seen anything like it.”
Jessica and Alex were already familiar with Memorial Sloan Kettering through their research on leukemia when Haldora first became ill. They made an appointment with Mark Souweidane, a pediatric neurosurgeon who cares for children of all ages with brain tumors. Dr. Souweidane has special expertise in tumors of the brain stem, which connects the brain to the rest of the body. Jessica recalls how calm she and Alex felt after making the trip to New York to meet him.
“We talked to people from other hospitals, but there was just something about Mark,” she says. “In that moment we knew he was the only person who could take care of our daughter.”
Throughout his career at MSK Kids, Dr. Souweidane has cared for many cancer survivors who have had to face the grim reality of a secondary brain tumor. “The typical behavior of these secondary tumors is not good, and they are frequently incurable,” Dr. Souweidane says. “But Haldora was not exposed to some of the usual cancer-causing therapies during her leukemia treatment.” That boded well for her situation.
Because of how the tumor looked on an MRI, Dr. Souweidane recommended a watchful approach, assuring Jessica that any subtle changes to the tumor could be detected by scans. Haldora would have images of her tumor taken near their home, and Jessica would send them to Dr. Souweidane to review.
A few months later, Dr. Souweidane felt that the tumor had changed enough to warrant surgery, which was scheduled for February 1, 2018. Haldora was 9 at the time.
Care at MSK Kids
Jessica was struck by the little details that made Haldora’s care at MSK Kids so personal. For example, she assumed Haldora would need her long, curly hair shaved for the surgery. But Dr. Souweidane was able to cut just a tiny strip from the back of her head. He called the preoperative marks he drew on Haldora “tattoos” and asked if she had a preference: maybe a butterfly or a flower? Haldora chose a skull and crossbones as a symbol of her courage.
Dr. Souweidane, although reassuring, was aware of what was at stake. The tumor originated in a very unforgiving part of the brain stem, a place that controls heart rate, swallowing, breathing, and a host of other vital functions. There is a consensus among neurosurgeons that this type of surgery is trecherous.
Dr. Souweidane’s experience, however, provided him with the necessary calm and confidence to completely remove the tumor. The surgery took five hours. Haldora stayed in the Pediatric Intensive Care Unit for one day before moving to the inpatient unit at MSK Kids. Jessica was relieved that Hunt was able to stay at her bedside throughout the day.
“Having him around let her be a kid,” she says. “I am convinced that so much of how well she’s done has been because of him.”
When it was time to leave the hospital, Haldora and her family temporarily moved to an apartment in Manhattan so they could be close to MSK Kids for follow-up appointments. At her first appointment after surgery, Dr. Souweidane said it might be a good idea for the family to meet a neuro-oncologist in case they needed one down the line. Jessica thought the process would take all day and was eager to get the kids back home to play. She was stunned when Matthias Karajannis, Chief of the Pediatric Neuro-Oncology Service at MSK Kids, came to meet them 15 minutes later.
Dr. Karajannis explained that the tumor Haldora had was very, very rare. In fact, he knew of only one other case of this tumor in the brain stem. Because it was so rare, Dr. Karajannis recommended that the family meet with geneticist and pediatric oncologist Michael Walsh. Dr. Souweidane had preserved some of the tumor after the surgery so it could be genetically sequenced. This way, the family could see if it was caused by a genetic mutation.
Dr. Walsh was quick to accommodate the family. “He was so lovely, funny, and nice,” Jessica says.
The results were negative for a genetic predisposition, but Dr. Walsh stays in touch with Haldora’s family as the field of genetic testing continues to evolve.
Haldora returned to school just two weeks after her surgery. She wanted to be back in time for Valentine’s Day, Jessica says.
Haldora gets scans every six months, which Jessica sends to Drs. Souweidane, Karajannis, and Walsh. Today, Haldora is 11 years old and loves sailing, sushi, and painting her nails. When she grows up, she wants to be a brain surgeon. She even recently asked her parents for a pretend MRI machine like the one in the MSK Kids Recreation Center.
“There’s something about MSK that takes them away from what they’re going through,” Jessica says. “She has such good memories that she wants to go back to New York to see the doctors. She’s not traumatized by the experience. It’s all part of this grand adventure for her.”
Jessica says that while she had heard many opinions about how to handle Haldora’s care, looking within for answers helped her get through it.
“At the end of the day, you have to listen to yourself,” she says. “Alex and I spent a lot of time thinking about what we heard, how we felt, what was important. That’s how we chose Dr. Souweidane for our daughter. We just knew.”