Helping a young brainstem tumor patient regain control of his life

As a pediatric neurosurgeon for the Brain Tumor Program at Texas Children’s Cancer and Hematology Centers®, I’ve seen many pediatric and adolescent patients with different types of brain tumors. When we evaluate, diagnose and treat these patients, our team uses a multidisciplinary approach to ensure every treatment plan is tailored to the patient’s individualized needs to produce the best possible outcome.

When I first met 5-year-old Calvin in December 2020, he had been diagnosed with pilocytic astrocytoma, a slow-growing tumor located on his brainstem. While his doctors in Colorado were confident the tumor was low-grade, they could not be sure until Calvin’s tumor was surgically removed and examined.

“We were devastated by our son’s unexpected diagnosis,” Calvin’s mom said. “Our son is a happy boy and loves to smile for the camera. When we noticed a slight droop in his face – what looked like a crooked smile – we had images taken to make sure it wasn’t a sign of something serious, which is when we discovered the tumor. After our son’s diagnosis, my husband and I contacted at least 12 pediatric hospitals across the country that specialize in brainstem tumors. We wanted to know the volume of cases they had seen, how many patients they had successfully treated, and we wanted to be comfortable with whoever performed our son’s delicate surgery. It was not a trivial decision to travel for treatment during the pandemic, but we were willing to do anything to get Calvin the best treatment possible. After researching and reviewing our options, we chose Texas Children’s for Calvin’s surgical treatment.”

Through the Brain Tumor Program at Texas Children’s Cancer Center, our neurosurgery and neuro-oncology teams treat approximately 140 new pediatric brain tumor patients every year including patients referred from countries around the world. In the case of Calvin’s tumor type – brainstem pilocytic astrocytoma – we treat approximately 10 cases per year, and many of these brainstem tumor patients have made incredible progress following their brain surgery.

When a tumor is located on the brainstem, it raises concerns for the patient, their family and our multidisciplinary care team. The brainstem is a very delicate region located at the base of the brain that controls many critical functions like breathing, swallowing, heart rate, blood pressure, movement, and balance. When I first met Calvin’s parents, they told me many of the neurosurgeons they consulted with agreed tumor resection would be the best surgical treatment approach for Calvin. But, they also differed on how aggressively to treat the brainstem tumor. Given the location of the tumor, there was considerable concern about attempting a complete resection.

“When we met with Dr. Aldave, he shared his previous experiences treating children with the same kind of brainstem tumor that our son had,” Calvin’s dad said. “As concerned parents, we had many questions regarding our son’s condition and Dr. Aldave always took the time to answer our questions and address our concerns. From that moment, my wife and I were confident we made the right call and found the best neurosurgeon to help our son – and for that, we are so grateful.”

When children like Calvin are referred to us, we discuss the clinical information at our weekly conference which involves a large, multidisciplinary group of providers including neuro-oncologists, neurologists, neuro-radiologists, neuro-ophthalmologists, radiation oncologists, neuropathologists, molecular pathologists and neurosurgeons to discuss the best treatment approach for each patient. In Calvin’s case, we considered all of the treatment options available and carefully assessed the potential risks and benefits to ensure the best prognosis. Collectively, we had to determine how aggressive we needed to be if we were to surgically remove the tumor, and with the guidance of our oncology partners, we discussed what options were available besides brain surgery.

Since Calvin’s type of tumor was found in a very delicate location of the brain and is relatively common in pediatric brain tumor patients, we determined the best treatment for this type of tumor is complete surgical removal. Oftentimes, surgery is not possible and other treatment options like radiation or chemotherapy are considered in this age group. Fortunately for Calvin, we were able to resect his brainstem tumor.

Following his surgery, Calvin received physical, occupational and speech therapy daily in our Inpatient Rehabilitation Unit. This was an important component of his inpatient care that helped contribute to the remarkable progress he made two weeks after surgery. His physical therapy sessions focused on improving his posture, decreasing the pain and tightness in his neck, and promoting improvement in his mobility for daily tasks. As part of his post-surgical care, his neuro-oncology team of Drs. Fatema Malbari and Holly Lindsay will longitudinally follow up with Calvin to determine any late effects of the surgery on his function, and he will be followed annually by our neuro-psychology team to monitor his progress.

“We are so thankful to Dr. Aldave and Calvin’s entire care team including his physical and rehabilitation therapists who helped him during his recovery after brainstem surgery,” Calvin’s parents said. “Calvin can hold his head up without any pain, his balance has improved and he can walk with hardly any assistance. Initially, Calvin had difficulty swallowing water. Two weeks after surgery – when he turned 6 on Jan. 8 – he could swallow without any discomfort. Dr. Aldave told us he was able to preserve the lower cranial nerve bundles responsible for swallowing. When we see how much our son has improved, we credit it to the skill of our neurosurgeon and all those involved in his care that helped Calvin make a quick recovery.”  

Click here to learn more about the Brain Tumor Program at Texas Children’s Cancer Center.