Against all odds, a 10-year-old girl with possibly ependymoma or choroid plexus papilloma (as biopsy is not performed) in her right lateralis ventricle brain cancer has finally had her feeding tube removed after a 6-year battle.
When Alia was diagnosed with a brain tumor in 2016 at the young age of 10, her symptoms included vomiting, dizziness, and an enlarged head.
The initial diagnosis was hydrocephalus, but a CT scan revealed a 7 x 8 x 9 cm tumor made up of several nodules, possibly ependymoma or choroid plexus papilloma at her right lateralis ventricle and caused obstructive hydrocephalus. Brain Surgery and Radiation Therapy was offered from hospital for treatment and installation of VP Shunt but due to the high risk of the procedure in her case, all suggestion was rejected by the family. Alia was treated at home with a feeding tube attached through her nose, but her condition continued to decline. She experienced seizures and lost her sight and mobility.
In March 2017, she was paralyzed, had unsynchronized eyeballs movement/ visions, unable to communicate, had highly frequent seizures, she is using NGT to keep her nutrition intake and totally bedridden.
In 2017, Kang Rangga decided to let Alia try ECCT as her ependymoma brain cancer treatment. After three months of usage, Alia's progress was slow but noticeable. Her spasms were reduced, and she had better urinary control. However, a CT scan showed that the tumor had grown from 9cm to 11cm.
Despite this setback, Kang Rangga persevered, and continued to use the device for Alia's therapy. Over the course of five years, Alia's development was slow but steady. Her head size began to shrink, and her seizures disappeared. While the tumor had only decreased in size from 11cm to 7cm, Kang Rangga remained steadfast in his refusal to have a brain tube installed.
Finally, after six years of continuous care, Alia was able to have her feeding tube removed and could eat and drink with the help of a spoon. Kang Rangga's dedication to his nephew's care has been unwavering, and the family is grateful for his patience and commitment to Alia's recovery. While progress has been slow, the family is grateful for this remarkable development.
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