Ethan was diagnosed with a brain stem tumor (Diffuse Intrinsic Pontine Glioma) on 12/03/08, which he bravely battled for 14 months.
Around Thanksgiving of 2008 we started to notice some odd changes with Ethan. He was walking like he was intoxicated and his speech was slurred. To watch TV he was putting his head down and to one side, only looking with one eye.
On Monday, December 1, 2008, I took Ethan and Jacob, his brother, to have them looked at by their pediatrician. Jake had been having stomach pains. A CT Scan revealed that Jake had appendicitis and emergency surgery was performed that night at AI duPont Hospital for Children.
Ethan was referred to a Pediatric Neurologist. The next day I took Ethan to see the neurologist. He had him do a few coordination tests. He then advised that he would like to do an MRI and that the MRI office that is attached was staying open for us until they finished the MRI. He then told me that he wanted me to bring Ethan’s father in first thing in the morning for the results. I told him that Jacob was probably getting released so I was not sure what time. He said to come in whenever we can, he will make sure he is there. So Ethan very bravely laid perfectly still for his MRI with contrast. He had to have an IV but did a great job. The next morning Mike and I brought Ethan to the Doctors office. He told us the worst news we could ever have imagined. Ethan has a brain tumor. He could not give us an exact diagnosis but that he was admitting Ethan to AI duPont immediately and that the Neuro Oncologists there would be waiting for us. We were stunned. Jon was in Georgia getting ready to leave for a 20-day trip overseas. Thank goodness I called him just before the plane left and he was able to come home. That night we were given the official diagnosis. Diffuse Pontine Glioma (sometimes referred to as Diffuse Intrinsic Pontine Glioma) DPG or DIPG.
Ethan was a very happy 8-year-old boy and loved to play baseball, tell jokes, read, play games, and cuddle with his dogs. He was a huge Phillies fan and was ecstatic when they won the World Series in 2008. Ethan was a 3rd grader at Allen Frear Elementary School, Camden Delaware. He loved to do math, read and write stories.
Ethan has 14-year-old big brother Jacob. Ethan completed radiation on 01/30/09. Ethan took Temodar from December 2008 – October 2009. Ethan received Avastin bi-weekly from October 2009 until January 2010.
Ethan passed away peacefully with his parents and step parents by his side on January 28th, 2010 at 7:45 pm.
Ethan was able to give the Gift of Life in the form of the donation of his kidneys and corneas to patients in need and of his liver for research of the effects of chemotherapy and his tumor for research for new understanding and treatment of Diffuse Intrinsic Pontine Glioma.
The recipient of both of Ethan’s kidneys was a man in his 50’s from Illinois who had been on the waiting list for over 3 years.
The recipients of Ethan’s corneas were two different men from Pennsylvania.