When active 8-year-old Grant began 2nd grade his height started slowing down on the growth chart and his weight climbed at an alarming rate. At each yearly check-up with our pediatrician Grant was told to exercise more, snack less. Already active in soccer and intramural basketball, Grant joined the YMCA swim team. Before his diagnosis he was swimming 3-4 days a week and training with a personal trainer 2 days a week. The more Grant exercised, the more weight he put on. His body ached from sore muscles, poor sleep due in part to insomnia, anxiety, mood swings, and gastrointestinal distress.

In March of 2021 we stumbled upon a Facebook post about “buffalo humps” which Grant had developed a couple years prior. Unfamiliar with this term, a quick google search unveiled this as a symptom of Cushing’s Disease. Grant had so many of the symptoms that it became clear to us that we may have finally found a cause for his many symptoms. The pediatrician ordered a blood test that showed high Adrenocorticotropic hormone (ACTH) and referred us to the local pediatric endocrinologist who followed the testing protocol laid out from the National Institute of Health including several 24-hour urine collections, midnight saliva tests, and 8 a.m. blood draws to measure cortisol and ACTH and cortisol. After these measurements consistently showed high levels of ATCH, Grant was sent for an MRI of his brain with and without contrast. The MRI showed a 2 cm pituitary macro adenoma filling the sella and dipping down into his left cavernous sinus.

With the MRI images in hand, we began interviewing neurosurgeons in the Midwest. We found it challenging to find a surgeon with experience operating on these tumors in children and even more so once the tumor had invaded the medial wall of the sinus cavernous. After interviewing 4 surgeons, we decided on the children’s hospital that presented a plan involving both a pediatric neurosurgeon, adult pituitary neurosurgeon, and pediatric endocrinologist.

Grant’s first surgery was in late June 2021. At that time the team felt they were able to surgically remove the tumor in its entirety because there was a cortisol drop but never low enough to the signal a complete resection.

Disappointed and deflated, we went back on the search for another surgical option. Grant’s aunt sent an article from a Stanford University Alumni magazine about a neurosurgeon at Stanford School of Medicine who had developed a technique for safely approaching and removing tumors in the cavernous sinus. After a series of telehealth consultations with Dr. Juan Fernandez-Miranda, the plan was in action for Grant to undergo a follow-up surgery to target the remaining tumor.

The second surgery took place in March of 2022. At the post-op briefing, Dr. Fernandez-Miranda explained that while the remaining bulk of the tumor was removed from the cavernous sinus, there was not a clear margin and that the tumor cells had also invaded the membrane of the carotid artery. A judgment call was made for Grants safety and left with no more safe surgical options, radiation was recommended.

Grant received Cyber-Knife Radiation in early May 2022. The 30-minute treatment was painless and left Grant with a mild headache in the following days. No noticeable changes happened in the first few months post-treatment but by early November 2022, Grant had dropped 12 pounds and grew 2 inches taller. His energy level is climbing back and he’s sleeping better, having more fun in social situations, and experiencing all the ups and fewer of the downs of middle school life.