Talkative boy shares his good news with everyone he meets
On a warm day last June, Lewis Larsen proclaimed his good news to everyone who passed by on his stroller ride around the Stanford University campus with his parents.
“The brain tumor is out! The brain tumor is out!” he gleefully shouted.
Even though Lewis was only 2 years old at the time, he was easily understood because talking is his favorite thing to do and he’s really good at it. Plus, he couldn’t resist showing his excitement. After all, he had just spent nine days in the hospital.
Lewis and his parents, Luke and Rachel, were at Stanford Medicine Children’s Health, where he had received a highly complex neurosurgery for a rare brain tumor called a craniopharyngioma. He was right to be excited. Not only was his brain tumor out, but it was done so with such skill that he had zero damage to his hypothalamus (the body’s hormone, sleep, and basic function control center) and very minimal deficits—something that is hard to avoid when removing a craniopharyngioma.
“While craniopharyngiomas are benign, they are one of the most challenging brain tumors to treat. They arise from the pituitary stalk at the center of the base of the skull near critical structures, including the brain’s hypothalamus, visual pathways, and deep brain vessels. If the hypothalamus becomes damaged, children can have many deficits,” says Juan Carlos Fernandez-Miranda, MD, surgical director of the Stanford Brain Tumor, Skull Base, and Pituitary Centers and an internationally known expert in skull base surgery. “Yet they are curable.”
To cure them, neurosurgeons must remove them entirely without damaging adjoining brain tissue. Two common brain surgeries to treat them are a craniotomy—an open brain surgery—or an endoscopic endonasal procedure—removing the tumor through the nose. The latter is rarely done in young children due to the size of their nasal cavity.
Discovering pituitary gland problems, then a tumor
At 3 months old, Lewis was diagnosed with panhypopituitarism—a deficiency of pituitary hormones due to the pituitary gland not working correctly. He was experiencing jaundice, low muscle tone, and low energy. Then, at 10 months old, his right eye started turning in. His family rushed him to the emergency room near their home in Portland, Oregon.
“That’s when they diagnosed the craniopharyngioma. It’s rare, but diagnosing it at Lewis’s age made it even more rare,” says his mom, Rachel.
The couple was offered a craniotomy, something they couldn’t accept for their baby. “When we heard about the endonasal approach, we thought that sounded so much better. But there wasn’t anyone near home willing to do that on a baby,” says his dad, Luke. “We decided to wait until he was older so it would be safer.”
In the meantime, Lewis had treatments to limit the tumor’s growth and symptoms, including the placement of a catheter to periodically relieve fluid buildup around the tumor.
Choosing Stanford Children’s to remove the tumor
During their research on where to seek care, Lewis’s parents came across a patient story of a toddler named Ari who had the exact surgery Lewis needed at Stanford Medicine Children’s Health. Ari had a great outcome despite having had a tumor that was even bigger and more complex than Lewis’s.
“That story was the main reason we called Stanford Children’s. We read it over and over again. It gave us hope,” Rachel says.
The couple contacted Ari’s parents and talked about their experience. They then reached out to Dr. Fernandez-Miranda, who had performed Ari’s surgery.
“We talked to seven other neurosurgeons across the nation, and when we met Dr. Fernandez-Miranda, we thought, wow—he really understands this tumor and all the approaches,” Luke says. “When he said we should come to Stanford for the surgery, we didn’t see it as self-promotion, we saw it as compassion for us—that he really wanted Lewis to have the best results.”
For a year prior to the surgery, Dr. Fernandez-Miranda reviewed Lewis’s scans and consulted with the family virtually, out of a personal motivation to better the outcomes for kids with these brain tumors. He has performed close to 2,000 endonasal brain surgeries in his career.
“The endonasal approach is done widely across the nation, but often at a more basic level. There are only a few places that have the demonstrated expertise and vast experience we have—and Lewis required our high level of expertise,” Dr. Fernandez-Miranda says.
He supported the Larsens’ desire to wait. It made sense because Lewis still had some pituitary function. “I knew with the resection all of the pituitary would be compromised, so giving him a few more years of growth with natural hormones was a benefit,” he adds.
At 2 and a half years of age, Lewis had a pituitary gland that was working poorly and worsening vision. Then, fear of a new tumor developing near his hypothalamus triggered worry that Lewis would develop hypothalamic obesity. It was time to operate.
Brain surgery through the nose
To perform the advanced endoscopic endonasal surgery, Stanford Children’s assembled a large team, combining experts from both of Stanford Medicine’s hospitals. Having adult and children’s hospitals as next-door neighbors, with doctors fluidly working together, is an uncommon yet perfect setup for caring for children with craniopharyngiomas. Because the tumors are rare in young kids, it’s hard to find a pediatric neurosurgeon with a lot of experience in treating them. That’s why having an adult-medicine neurosurgeon on the team is critical.
The team included Dr. Fernandez-Miranda—a world authority on the surgery—and one of his partners in endonasal endoscopy, Jayakar Nayak, MD, PhD—an otolaryngologist (ENT) from Stanford’s adult hospital (Stanford Health Care), the nation’s No. 1 leader in ear, nose, and throat care.
The surgery was performed at Stanford Children’s with a highly skilled pediatric neurosurgeon, Laura Prolo, MD, PhD, guiding the process before, during, and after surgery. The team also included endocrinologists, critical care doctors, and specially trained nurses. The family found peace in having Birgit Maass, MD, as their neuro-anesthesiologist, since she was Ari’s doctor as well, calling her “a dream to work with.”
“We are a great team and we work so well together. Everyone has their role, and we trust each other’s expertise,” Dr. Prolo says.
“The great collaboration between the two hospitals and the doctors really stood out. We felt really supported and very confident that we had done the work to make sure Lewis was in the best hands possible,” Luke says. “Dr. Prolo was wonderful. She met with us every day and coordinated everything.”
The surgery was a grueling 10 hours, guided by an MRI- and CT-derived image of Lewis’s brain to help doctors clearly visualize his tumor and nearby brain structures. The surgery is minimally invasive and doesn’t demand any incisions in his head.
“It was extremely hard waiting all day,” Rachel says. “We knew side effects were not uncommon. We had all of these stories in our minds of cases we had read where kids woke up with changed temperaments, a lifelong problem with eating, or blindness.”
While his parents waited with bated breath, getting updates and sending them on to family and friends, the doctors were focused, each doing his or her job. First, Dr. Nayak gained access to the tumor by threading an endoscope (thin tube) up into Lewis’s nose and sinuses. The endoscope has a light and a camera that sends images to a monitor. By watching the monitor and threading small, specialized tools through the nose, Dr. Fernandez-Miranda meticulously cut every attachment to the tumor and removed it in blocks. Dr. Prolo assisted and consulted on the best next move. At the end, Dr. Nayak closed the opening with a mucosal flap, and an intraoperational MRI was performed to ensure that none of the tumor was left behind.
“Everyone has a very important role. Dr. Nayak drove the endoscope during the whole operation, which let me use two hands at all times to remove the tumor,” Dr. Fernandez-Miranda says.
Finally, the family heard the amazing news: The tumor was out, and they had gotten it all.
“We were in shock and disbelief. The neurosurgeons walked into the waiting room and said, ‘It went perfectly and better than expected. We got the whole thing,’” Rachel says. “And the best part is there was no damage! It speaks to Dr. Fernandez-Miranda’s incredible skill as a surgeon.”
Luke was amazed by how good Lewis looked after surgery. He remarked that there was no swelling, saying “All it looked like was that he had a bloody nose.” “It’s an amazing procedure. A few days after the surgery, we saw his turned-out eye start to correct. Not completely, but some,” Luke says. “We can’t believe they got it all without any problems.” Lewis’s recovery went without a hitch, and nine days later he was strolling the Stanford University campus, sharing his good news with anyone who would listen.
Still celebrating a successful surgery today
A month after returning home to Portland, the family welcomed Emmett—Lewis’s little brother, with whom he loves to share his miniature cars and snuggle. Lewis’s latest MRI is totally clear; his brain will be rechecked regularly as he grows. He will receive hormone treatment throughout his life to replace his missing pituitary gland and to treat his diabetes insipidus—the single deficit he acquired. However, his parents find that a remarkably good trade-off for not having to worry about his tumor ever recurring.
“We can never be 100% sure, but I am very confident that Lewis is cured and the tumor will never return,” Dr. Fernandez-Miranda says.
Lewis recently turned 3 years old, and the memory of the surgery is still fresh in his mind. He talks about getting the tumor out, sometimes adding, “The lumbar drain is out! The IV is out!”
By providing the highest level of advanced care available in the world, the two-hospital team gives hope to families like the Larsens who have been told that their child’s tumor is inoperable or those who have had previous surgeries or failed radiation treatments.
“Coming from out of state, there were a lot of moving parts, but through it all we experienced incredible care from a large team of people who never stopped supporting us,” Rachel says. “We couldn’t be happier with the outcome.”
Learn more about brain tumor treatment at Stanford Children’s >
