Sean was a healthy and robust boy until the summer he turned ten. It was then that Sean’s battle with Gliomatosis Cerebri began. Sean was diagnosed with the malignant brain tumor after being admitted into the hospital for seizures during a family vacation in Rhode Island. After a few days at a hospital in RI, he was transferred to Boston Children’s Hospital where he had a team of experts from infectious disease, neurology and eventually neuro-oncology trying to determine the exact cause of the seizures. Sean’s rare tumor grows like a spider web unlike a solid mass as with most tumors. The tumor’s rarity, presentation and cancerous threads made an accurate and expedient diagnosis challenging for Sean’s medical team.
It was over 2 weeks of hospitalization in the ICU, numerous tests and eventually a brain biopsy before Sean and his family was given the diagnosis of terminal cancer. Dr. Peter Manley of Dana-Farber gave the Jucha’s the diagnosis and advised the family they would treat Sean very aggressively. With the help and guidance of Dr. Manley of Dana Farber, and Dr. Kanwar at Albany Medical Center, Sean was able to sustain almost 3 years of aggressive, challenging treatments in an attempt to halt the progression of this fatal disease.