From Diagnosis to Hope: Aydan’s Brave Journey with Craniopharyngioma
In April 2021, Aydan Arguello’s life changed forever when he was diagnosed with a craniopharyngioma, a rare brain tumor that grows near the pituitary gland. What followed was an incredible journey of resilience, medical innovation, and unwavering love from his family as they navigated the challenges of this diagnosis.
Aydan, then a toddler, first showed signs of illness with an unusual, insatiable thirst. After a diagnosis of diabetes insipidus without a clear cause, his parents, Janeisy and Bergman, pressed for answers. Janeisy, a trained nurse, suspected something deeper was wrong. Her insistence on an MRI led to the discovery of a large tumor—already the size of a mandarin orange—affecting vital functions in his brain.
The Search for the Right Care
The Arguellos began their search for the best possible care for Aydan, navigating a maze of medical opinions and treatment options. Initially, a neurosurgeon in Miami drained part of the tumor, and Aydan started hormone replacement therapy. Yet the family knew this was only a temporary solution.
They consulted with specialists nationwide and ultimately found hope in Boston. Dr. Lissa Baird, co-director of the Brain Tumor Center at Dana-Farber/Boston Children’s, offered a logical, evidence-based approach that resonated with the family.
In July 2022, Dr. Baird successfully removed Aydan’s tumor, giving the family a fresh start. However, complications arose a few months later when scar tissue caused hydrocephalus, a buildup of fluid in the brain that led to severe headaches and nausea.
A 1,500-Mile Dash for Help
When local options fell short, the Arguellos made the difficult decision to return to Boston. With Aydan’s condition worsening and time running out, the family took extraordinary measures to fly him there for treatment. They arrived at Boston Children’s Hospital to find a dedicated team ready to perform a minimally invasive surgery to relieve Aydan’s symptoms.
Building a New Life
Recognizing the need for ongoing care, the family relocated to Massachusetts. For over a year, Aydan received close monitoring and additional treatments. While his journey has been far from easy, his parents credit the collaborative and compassionate team at Boston Children’s for giving them hope.
Now 4 years old, Aydan is thriving. His sassy personality and dreams of becoming a doctor or nurse inspire everyone he meets. Through his treatment, he’s also contributing to research on craniopharyngiomas, helping future patients like him.
Looking Ahead
The road ahead is uncertain, but the Arguellos take things one day at a time. Aydan continues regular follow-up care, and his parents remain optimistic.
Aydan’s story is a testament to the strength of families facing craniopharyngiomas, the dedication of medical professionals, and the importance of persistence when seeking answers.
If you or someone you love has been affected by a rare brain tumor, the Raymond A. Wood Foundation is here to support you. Together, we can make sure no family feels alone on their journey.
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