Overcoming the Challenges of a Rare Brain Tumor
When Kelly’s son, Aidan, turned 13, she noticed something concerning: he hadn’t grown in three years. Trusting her instincts, she advocated for a referral to an endocrinologist. In February 2024, at their first appointment at Penn State Hershey, doctors uncovered the root of the issue—Aidan’s growth hormone levels were alarmingly low. Initial discussions about growth hormone therapy quickly led to more tests, including an MRI, which revealed a lesion near his pituitary gland.
By April 2024, Aidan’s journey took him to the Children’s Hospital of Philadelphia (CHOP), where a second MRI confirmed the lesion’s presence. His neurosurgeon ordered additional tests, including a CT scan, a spinal tap, and consultations with specialists. Despite these efforts, the results were inconclusive, and the medical team determined that a biopsy was the next critical step.
On July 19, 2024, just two days after his 14th birthday, Aidan underwent brain surgery. The biopsy confirmed he had a Craniopharyngioma, a rare brain tumor. Remarkably, the surgeons were able to remove the tumor completely, but the road to recovery was far from smooth.
Aidan’s post-operative experience was fraught with complications. He had an allergic reaction to morphine, experienced episodes of delirium, required re-intubation, and struggled to regulate his body temperature. As if that weren’t enough, he suffered two strokes during this critical period. Through it all, the dedicated medical team at CHOP worked tirelessly to stabilize him. Eventually, Aidan was taken off the ventilator, and his recovery began in earnest.
Once home, Aidan’s new reality included daily medications to replace the hormones his body could no longer produce. Steroids, DDAVP, and levothyroxine became part of his routine, and a few months later, he began growth hormone therapy. Testosterone therapy soon followed, helping him navigate the physical changes brought on by his condition.
Now a freshman in high school, Aidan is thriving. He enjoys skiing, playing video games, and spending quality time with his family. Most importantly, his first post-surgery MRI showed no signs of tumor regrowth, bringing a sense of relief and hope to his family.
Kelly reflects on this journey with immense gratitude for the exceptional care Aidan received at CHOP. “We are deeply thankful for the medical team’s expertise and dedication,” she shares. Aidan’s resilience and the unwavering support of his loved ones have been the cornerstones of his remarkable recovery.
Aidan’s story is a testament to the power of perseverance, the importance of trusted medical care, and the strength found in family and community. The Raymond A. Wood Foundation is honored to share his journey and remains committed to supporting families navigating similar challenges.
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