Small Hero, Big Victory – Sponsor Content

Two-year-old Lewis’s complicated brain tumor surgery at Stanford Medicine Children’s Health brings hope to families like his.

The signs of Lewis Larsen’s condition were there from the beginning: When he was three months old, his parents, Luke and Rachel, noticed he was falling behind on growth milestones; doctors said he’d require hormone treatments.

Then, when Lewis reached 10 months, his eye began to turn in. His family rushed him to the emergency room, where doctors told them that little Lewis had a rare condition called craniopharyngioma, which was causing severe visual loss. This benign but rare and complicated tumor was made even more unusual by Lewis’s young age.

“These tumors, while they are considered benign, are in a critical part of the brain that controls endocrine function, mood, hunger, satiety, and vision,” says pediatric neurosurgeon Dr. Laura Prolo, of Stanford Medicine Children’s Health. “All of the critical blood vessels that supply blood to the brain are surrounding this area. So it’s a very delicate part of the brain.”

Local doctors in Oregon recommended that Lewis undergo a craniotomy, a surgical procedure to remove part of the skull to access the brain. But Luke and Rachel weren’t certain it would be the right course of action. “There’s so many stories—that are really hard to read—of kids who’ve had to have multiple craniotomies. And each one gets harder with more symptoms. It’s kind of like a never-ending treatment plan,” says Rachel.

In their research, they found a Facebook group for parents like them, all looking for and sharing stories about the condition. There, they read about a two-year-old toddler named Ari who underwent treatment for his complicated case of craniopharyngioma at Stanford Children’s. Through this story, the Larsens learned about two critical options that would be a turning point in Lewis’s journey: pediatric endonasal surgery, during which the tumor is removed through the nose, and Dr. Juan Carlos Fernandez-Miranda, a renowned skull base neurosurgeon at Stanford Medicine who has performed more than 2,000 endonasal brain surgeries in his career and is known for his expertise in minimally invasive brain surgery.

“The conventional wisdom at that time for patients Lewis’s age was just, There’s only one way to go, and it’s through the skull. Do the craniotomy. And that’s not the best option, it’s just the only option,’” says Luke. “And so when we heard about Ari, and especially with his tumor, which seemed much more complicated and bigger, and yet he still had a successful surgery, it was like ‘Whoa!’”

Luke and Rachel asked their local surgeon about an endonasal surgery but were turned away due to Lewis’s young age. They decided to email Dr. Fernandez-Miranda—and were prepared to wait awhile for a response as they continued researching their options. Dr. Fernandez-Miranda, affectionately called Dr. JFM by his patients and team, responded within an hour. They quickly set up an in-person meeting. Luke and Rachel recall Dr. Fernandez-Miranda’s confidence and honest messaging as he spoke to them about Lewis’s condition. Rachel says he was patient in answering their questions, even when they felt overwhelmed or as if they were repeating themselves.

“He seemed so understanding of where we were in the journey. I could tell he was speaking from concern for Lewis. He was like, ‘Once it is the right time for endonasal surgery, you should come to Stanford Children’s and do it here.’ So that’s ultimately why we eventually made the call,” says Luke.

At this time, Lewis’s other treatments seemed to be working. He underwent placement of a fluid-draining catheter at a different institution to reduce the cystic portion of the tumor and relieve its symptoms, as well as biweekly chemotherapy infusions. Dr. Fernandez-Miranda received regular updates about Lewis’s treatment and suggested waiting to see if Lewis’s condition would improve with these measures, as surgery would affect his pituitary function—and therefore his growth—for life. The treatments worked for a time. But then Lewis’s vision and pituitary function began to worsen. Surgery became the best course of action. His care team at Stanford prepared for his arrival and for the difficult endonasal surgery ahead of them.

With a craniotomy, doctors “go through the skull and use a microscope for visualization. You have tactile feedback and you have more room to work. However, there is trauma to the brain using this approach, the view is limited, risk of complications is higher, the chance of total resection is lower, and the child is left with a visible scar,” says Dr. Prolo. Endonasal surgery offered Lewis a better chance for a full recovery, despite the procedure’s complexity. “The opening at the skull base is probably less than a centimeter between the major vessels that supply blood to the brain. So you’re taking out this large mass through this very small opening, all through the nose, using the camera and looking at a screen, but it is a direct path to these tumors without disrupting the surrounding brain, and there is a much higher chance of removing the entire tumor and thus preserving vision.”

Some of the instruments used in the surgery were developed by Dr. Fernandez-Miranda himself and were specifically crafted for this kind of careful operation. This level of cutting-edge innovation is key to Stanford Children’s ability to treat rare and complicated pediatric cases. Innovation must be combined with rigorous expertise. As Dr. Fernandez-Miranda says, to be able to do a surgery like the one Lewis received takes decades of training and experience. And behind all of this is a culture of collaboration. With Stanford’s children’s and adults’ hospitals next to each other, a pediatric neurosurgeon like Dr. Prolo can work alongside Dr. Fernandez-Miranda, expert rhinologist Dr. Jayakar Nayak, and neuro-anesthesiologist Dr. Birgit Maass, in Lewis’s case. Then there are the engineering and research labs pioneering treatments for molecularly targeted therapies and other multidisciplinary approaches to treat human conditions housed nearby on the campus.

Care teams like Lewis’s span departments and skill sets. Dr. Prolo and Dr. Fernandez-Miranda worked alongside rhinologists, neuro-anesthesiologists, and endocrinologists who focus on pituitary and craniopharyngioma tumors, as well as advanced practitioners and surgical technicians. Nurses monitored Lewis to catch changes in his vision and other subtle symptoms. Whatever he needed, he had a provider on staff to ensure he received it. Rachel says Lewis’s doctors were highly attentive. Dr. Prolo came by every day to check on him as he recovered. “You can’t perform these surgeries if you don’t have all the parts of your team,” says Dr. Prolo. “Everyone respects each other, and we are all thinking together as a team about this patient to ensure the best care. That drives everything that we do.”

When Lewis arrived at Stanford Children’s, his doctors were impressed by how joyful and expressive he was. As hard as the path ahead of them remained, Luke says his and Rachel’s biggest fear was always that Lewis’s personality would change post-surgery.

“We were so afraid of him waking up and being a different person, because some of the side effects are so strong [that] they really can affect personalities,” Luke says. “Part of what’s made him so resilient and joyful is that he’s been through a lot of hard stuff that most kids don’t have to go through. Regardless of the outcome, our hope was that these experiences would shape him into a person who’s really loving and joyful and thankful for his life.”

The surgery lasted 10 hours and came with good news: The team got every part of the tumor out. In the days and months that followed, Lewis enjoyed sharing his good news with everyone he met: “The tumor is out! The IV is out!”

Lewis will require hormone injections throughout his life. But now, a year after his surgery, at three years old, his vision has improved, and he remains tumor-free. His doctors expect him to remain tumor-free for the rest of his lifetime.

Today, his joyful spirit reverberates through his family—and through other families whose children face rare diseases. “We made a conscious decision during his treatment to always be hopeful. Even if things didn’t look positive, we would always choose to hope,” Rachel says. In those moments, they drew on inspiration from others—and can now return the favor. “That would just be our true joy: to encourage any other family in a similar situation. Because it’s horrible—and you have to hold on to all the hope that you can get from other people,” she says. “Now, we tell everybody to go to Stanford Children’s.”