Torin is all about everything geek (Dungeons and Dragons, Dr Who, wizardry, Star Wars, etc. He loves computer games and volunteers with a little boy who has a neuromuscular disorder to teach him Minecraft. He loves reading joke books and being silly. He is an amateur novelist and is working on his third novel.
Torin had some issues with balance, coordination and energy level but we had no idea cancer was the cause was until Feb of 2009 when he became very sick with hydrocephalus. His MRI showed enhancement but no mass. He was in a lot of pain and vomitted continually. He had an external shunt placed and was hospitalized for 12 days. He had a lot of testing. There were cancer cells found in his spinal fluid but they scanned his whole body without finding a mass. The external shunt was removed and we were released but had to go back after 36 hours because the hydrocephalus had not resolved and he was very ill. He got his VP shunt at that point. We went on watch and wait and his tumur progressed to the point they could safely perform a biopsy. Torin was diagnosed with a high risk malignant brain tumor on 9/9/09 after six months of symptoms. His diagnosis is diffuse leptomeningeal PNET.
PNETs usually occur in the cerebrum and have a tendency to spread. Like many tumors, the exact cause is unknown. Standard treatment usually includes surgery but total removal of the tumor, due to many varying factors, is usually near impossible. PNETs usually occur in young children.
Torin had a very high dose of radiation because there was no tumor bed to boost. He also had high dose chemotherapy.
Since Torin’s diagnosis, we have clarified our priorities and make the most of our time. We are still sorting out some of the ways the trauma during treatment has affected our family relationships. We have come a long way together.
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