Josiah had been a little “out of sorts” through the beginning of last summer, a bit more lazy than usual, having trouble seeing (needing his glasses changed?) and having a few headaches…all of which was attributed to being a teenager. On July 11th he was playing cards, laughing and having a good time with family, when half of Josiah’s face wasn’t responding when he was smiling (facial sagging). He was taken immediately down to Cincinnati Children’s Hospital and after a CT Scan his parents were informed that Josiah had a golf ball sized tumor in the back of his brain, near the brain stem. The tumor turned out to be cancerous. Josiah had surgery that evening to put in an external shunt to relieve the fluid buildup in his brain and four days later, on July 15 th he had 15 ½ hours of surgery to remove the tumor. Thankfully the doctors were able to remove the entire tumor, but not without some issues. Because of where the tumor was located (near the brain stem) Josiah developed what is called posterior fossa syndrome. He has no brain damage, but the connections between the brain and body are “missing” or slow processing. Josiah is struggling with a lot of issues right now. He has had to relearn a lot of things. Josiah can now walk with the aid of a walker and his speech is coming back, but he talks slowly and with some enunciation issues. His fine motor skills were affected so he has trouble doing things with his hands, and his eyes were damaged as well. He has tracking problems (crossed eyed) and his vision is poor, even with his glasses. Add that to the cancer and a slower processing of everything and Josiah has a rough road ahead of him. Josiah spent 2 months and 11 days in the Hospital undergoing 6 surgical procedures (including the 2 mentioned above). He and his parents were the “nomads” of the Hospital, being shuffled back and forth to 9 different rooms on the Neurology, Oncology and Rehab floors. Josiah got out of the Hospital on September 22nd but still has a way to go. The type of tumor Josiah had (Choroid Plexus Carcinoma) is a very rare brain tumor that usually affects children under four years old. Due to Josiah’s age (13) and rarity of the tumor, the doctors are unsure of exactly how to treat him. After leaving the Hospital, Josiah underwent 30 days of outpatient radiation, 5 days a week for six weeks. He is also currently undergoing chemotherapy. He had two cycles of chemo before we left the hospital and two since radiation ended. Josiah has 4 to 6 more cycles of chemo left to go. (A cycle is 3 days in-patient getting the chemo, then 18 days at home). He also has weekly OT, PT and Speech therapy visits not to mention many different doctor and clinic appointments.
Send this Family a Prayer.