Teen Faces Off Against Brainstem Tumor

From his mindset to his vigor, 17-year-old Aaron Watkins is the definition of an athlete. So, when he started tripping without reason, getting nose bleeds and exhibiting other out-of-character symptoms, Aaron’s mother and father, Heather and Ronn Watkins, were concerned. Call it a parent’s intuition or perhaps a gut feeling, they knew something was wrong and they were determined to find out what it was.

Heather brought Aaron to a doctor to have him checked out. However, after noting the occasional out-of-character symptoms, they left with only routine suggestions, such as getting a humidifier for his room.

Despite following these to a T, symptoms progressed and were getting worse. “It was weird. He went from a great, aggressive lacrosse player to clumsy and timid,” Heather says. Despite repeat visits to different medical experts, the only insight the Watkins received was a diagnosis of scoliosis (a curvature of the spine) and reassurance that Aaron’s symptoms were consistent with being a teenager going through growth spurts.

However, his symptoms weren’t typical and continued to worsen. Aaron was now limping on his right side, his arm started to retract in, and his smile was a little crooked. Then the symptoms went from occurring one at a time, here or there, to all at once. Heather knew this was more than just a growth spurt or a result of his spine’s shape.

“The moment I knew my mom intuition was right was when we were on vacation at the beach,” Heather says. “Aaron’s favorite thing is going swimming in the ocean – he will stay out for hours. But when Aaron went out swimming in the ocean, he couldn’t come back into the shore without help.”

Heather brought Aaron back to the doctor again, completely committed to finding answers. “I hear what you’re saying about scoliosis, but the symptoms just aren’t adding up,” Heather told the doctor. “I’m telling you something is neurologically wrong – there’s a bigger problem here.”

Aaron failed his neurological exam, confirming Heather’s suspicions. Aaron was sent for an emergency MRI, where it was discovered Aaron had a significant tumor deep within his brain. Despite the referral she received, Heather did her research to find the best physician to care for Aaron. This led to her calling a friend who told her about the (at the time) recent arrival of Lehigh Valley Reilly Children’s Hospital’s pediatric neurosurgeon – and the first and only pediatric neurosurgeon in the region – David Hong, MD.

“Aaron was referred to me by a mutual connection right after I had started working at Lehigh Valley Reilly Children’s Hospital,” Dr. Hong says. “Through that personal connection, I was briefed on Aaron’s situation and what had been going on. Because we immediately understood the severity, we got him in right away.”

Scans revealed Aaron had a brainstem tumor, a location many surgeons would not dare to touch. “Anything affecting the brainstem can cause devastating effects on people, leading to a wide array of symptoms because of the complexity in this region,” Dr. Hong says.

After reviewing the scans, Dr. Hong and his team started to make plans right away.

The tumor was at a point where it had secondary results. Not only was it symptomatic, but there was also an obstruction that led to more complex problems in the brain. Aaron was now having some gait difficulty, balance issues and severe headaches – all pointing to a condition called hydrocephalus, which was caused by the tumor’s growth. If left untreated, this condition can be life-threatening, sometimes within days.

“The first thing we needed to do was address the secondary problem, as that’s where a lot of the symptoms were coming from,” Dr. Hong says. “Once the acute component was addressed, the rest could proceed less urgently.”

On July 19, 2022, Dr. Hong performed a shunt procedure to alleviate the growing pressure on the brain, which would address the headaches and balance issues Aaron was facing. Surgery to remove the tumor was not possible at that time, but the team did take a biopsy, which would help guide them through the next steps.

Biopsy results revealed Aaron had a unique tumor, due to its location and type.

“Removing the tumor was going to be complicated and risky,” Dr. Hong says. “The tumor was an infiltrating kind, so the edges were seeping into normal brain tissue. Going too far into that overlapping area could have catastrophic outcomes, like Aaron not waking up, not being able to move or process sensory information from the world, or other serious results. The type of tumor pathology was also not typically responsive to other forms of treatment, further limiting the options.”

Dr. Hong strategized with Lehigh Valley Reilly Children’s Hospital’s pediatric oncologist Jacob Troutman, DO, about the best treatment plan. After a lot of discussion, it was decided there were two important goals that needed to be achieved. The first was to obtain a bigger specimen to allow the team to perform additional detailed tests – which could open possibilities for targeting the tumor’s molecular makeup, what is referred to as “personalized medicine.” The second goal was to remove what they could of the tumor to reduce the pressure it was causing on surrounding areas. This would help reduce the symptoms Aaron was having.

Due to the high stakes of this approach, Dr. Hong set out to perfect Aaron’s exact procedure using the Children’s Hospital’s state-of-the-art VR/AR (virtual/augmented reality) technology. Access to this technology enabled Dr. Hong to virtually perform the extremely intricate and complex technique so that he was fully prepared and knew exactly how he was going to approach removing the tumor before even entering the operating room.

“At Lehigh Valley Reilly Children’s Hospital, we have one of the most sophisticated surgical tools for a neurosurgeon: Surgical Theater, a stereotactic navigation system which incorporates VR/AR advancements. This is not something you find everywhere,” Dr. Hong says. “Being able to use Surgical Theater for this type of complicated and unique tumor is critical because we can try a lot of different pathways to see which is the safest and most successful without any added risk to Aaron.”

On Sept. 7, 2022, Aaron underwent surgery No. 2, where Dr. Hong and his team spent seven hours removing as much of the tumor as they could in the safest way possible, using Surgical Theater while monitoring the brain to ensure that nothing was compromised during the operation.

Fortunately, Dr. Hong was able to remove about 50% of the tumor in a part of the brain often considered inoperable.

“We are so lucky and thankful to have Dr. Hong in our lives,” Heather says. “He’s a great surgeon whose care for us continued beyond the surgery room. At one point, Aaron had a seizure while he was in the hospital. It was Dr. Hong’s day off, but we were able to get him on the phone almost immediately. He helped calm me down and walked me through what to do. Dr. Hong wasn’t even in the hospital and he still answered my call.”

Following Aaron’s second surgery, the team decided to observe how the tumor responded for a bit. Scans revealed that, during that time, there actually was shrinkage of the tumor without any medicine.

After the tumor stabilized, Dr. Troutman and his team began the next steps in Aaron’s treatment plan and proceeded with immunotherapy, where specialized medication is used to stop additional growth. In March 2023, Aaron began taking entrectinib (Rozlytrek), an innovative tumor-agnostic medicine that represents a new approach to treating cancer. The results from his follow-up MRI in September 2023 revealed that the tumor was behaving with no new growth.

As for treating the secondary effects of the tumor, Aaron will continue working with Lehigh Valley Health Network’s (LVHN) physical therapy team on his balance, strength and other areas of concern. “From Aaron’s initial recovery to his current struggles, the therapists at LVHN have been amazing and they have helped Aaron make tremendous progress,” Heather says. In fact, just recently Aaron returned to the lacrosse field for the first time for a non-contact practice.

“We are really fortunate to have a great team caring for Aaron. It’s incredible to see the difference between where Aaron was before Dr. Hong and the team stepped in and where he is now,” Heather says.

“Dr. Hong is an amazing individual,” Heather says. “He saved my son’s life. He saved him.”

However, according to Dr. Hong, there’s someone else who deserves the credit in Aaron’s continuous recovery – Aaron.

“Parents are always very appreciative to us when there are good outcomes, but to me, a lot of the success is due to the patients and we are catalysts along the way,” Dr. Hong says. “That’s the case with Aaron. He has shown so much resilience and is the most unphased kid ever. He approaches everything very calmly and bravely and sticks with the things he needs to do and is making a good effort at it. That’s really important and that’s really hard because your whole life gets turned upside down, which for a high schooler can feel so huge. The recovery from a surgery like this requires dedication, sacrifice and hard work, and we know that does not come easy. I like to stress to parents that we are a combined team in this, and we will be working together through this whole process to help Aaron get the best possible outcome to lead his best possible life.”

While the future is uncertain, one thing is not: Aaron has the right team alongside him throughout his journey toward recovery.

“My care team is the best that I could ask for – they saved my life,” Aaron says. “I feel very lucky to have them still helping me on my journey. The fight is not done yet, but we are winning!”