Parent Blog: Sydney Coy
In their own words
West Des Moines, Iowa
Jack was flown from our local hospital to University of Iowa Stead Family Children’s Hospital on Sept. 22, 2017, after a CT scan showed he had a golf ball-sized tumor on his brain. He was experiencing "sunsetting" in his eyes [his eyes were looking down and his lower eyelid was partially covering the pupil] and he was vomiting any time he sat up. Once he arrived at UI Stead Family Children’s Hospital he was taken to surgery to have a shunt placed to drain excess fluid that had built up due to the tumor. Three days later his tumor was removed and sent for biopsy. We found out a few days later that the tumor was cancerous. In fact, it was a rare aggressive type of cancer called AT/RT, or atypical teratoid rhabdoid tumor.
Jack's treatment included two rounds of high-dose chemotherapy and three rounds of high-dose chemotherapy with a stem cell transplant. He currently is on "maintenance chemotherapy" and takes Tamoxifen daily, Accutane 15 days of every month, and Bactrim on the weekends. He also receives intrathecal chemotherapy each month through his Ommaya reservoir, a plastic catheter which was placed under his scalp at the top of his head.
Our experience has been beyond amazing! The staff is more like family and has gone above and beyond to help each family! They are beyond exceptional and genuinely great people! We are so happy to have all the staff at UI Stead Family Children’s Hospital in our lives.