Joey's Journey

a few days. When a call came in from a doctor at 5:00 that afternoon they knew something was wrong. The doctor told Cindy on the phone that they had to take Joey to the hospital as soon as possible. Their hearts sank because they knew something was seriously wrong. Little did they know that they would be told that Joey was diagnosed with an inoperable brain tumor called Diffuse Intrinsic Pontine Glioma (DIPG). David and Cindy were devastated by the news. They were told that there is no cure and that Joey had between 9 and 12 months to live. They previously lost a 15 month old daughter to complications of a kidney disease, how could this be happening again? Their world was turned upside down in a matter of minutes. They were sent on an emotional roller coaster that does not have a happy ending. Since then, Joey had radiation treatments to try to shrink the tumor and was placed in a vaccine study that could also possibly help slow the tumor growth. He was placed on steroids but effects of the steroids are very harsh. They have caused him to gain weight, loose muscle strength, amongst other side effects. His frail body can’t handle this anymore so they are considering removing him from the vaccine study and steroids in order to try another drug they are hoping improves his quality of life for the time he has remaining. Throughout this journey, Joey has been in and out of the hospital for several complications, including surgery to place a shunt in his brain and an infection that needed medical attention. Joey is required to see his doctors at least every 3 weeks and has already had numerous MRIs performed to evaluate the tumor and there are more scans to come. Joey’s parents are doing everything they can to give Joey the best life possible with his 2 sisters and 2 brothers. Neither of Joey’s parents have worked since October when Joey was last hospitalized because Joey has had several setbacks with motor skills and requires someone to be with him every minute of the day. As every parent would, they just want to spend every last minute they can with Joey. Even when one of them leaves him to do shopping or transporting the other children around, it is very difficult for them to be away from him. Donations will be used for medical cost, replace household income used for bills and anything that makes Joey happy. Please consider donating today. Diffuse Intrinsic Pontine Glioma is a tumor located in the Pons(middle) of the brain stem. The brain stem connects the cerebrum with the spinal cord. The majority of brain stem tumors occur in the Pons(middle brain stem), are diffusely infiltrating(they grow amidst the nerves), and therefore are not able to be surgically removed. The brain stem contains all of the “wires” converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation. They are usually diagnosed in children aged 5 to 10. It is impossible to remove the tumor in this area because it interferes with the functioning of this critical area of the brain. Some symptoms are muscle weakness on one side of the body, swallowing problems, speech problems, crossed eyes, drowsiness, hearing loss and personality changes. Because they are difficult to treat, the outcome for brainstem gliomas is poor. After diagnosis, the survival time is on average 9 to 12 months. When the tumor recurs, the focus of treatment is on managing symptoms to make sure the child is as comfortable as possible. Please join us daily for updates, photos and stories on Joey and his daily activities and condition. Help us spread this page across the world as we try to inform people about childhood brain cancer and how it is woefully underfunded.