|Jacob was diagnosed with a rare, inoperable brain stem tumor called Diffuse Intrinsic Pontine Glioma (DIPG) on May 19, 2009. He was just 8 years old. There is no known cure for DIPG, and most children will only live 9 months after diagnosis. Less than 1% will live two years. The standard treatment for DIPG has not changed in 30 years. Radiation is the only thing that has been found effective against the tumor, but its effects are short lived, and the tumor almost always starts growing again within 6-9 months. There are no known survivors once the tumor has begins to grow again.In June 2009, Jacob began six weeks of daily radiation treatments to shrink the tumor in , and also started on a chemotherapy regime of biweekly Avastin/Irinotecan infusions. Jacob finished radiation shortly before his 9th birthday in August 2009.
Around Christmas 2009, Jacob started showing symptoms that the tumor was growing again, and progression was confirmed by MRI at the end of December. We started on a new clinical trial that would allow Jacob to do most of his treatments at home, and after a month on the new medicine, an MRI showed that the tumor had shrunk 10%. Unfortunately that good news was short lived, and Jacob began to decline rapidly. Two weeks later, on 3/18/10, we had an emergency MRI which showed the tumor had regrown that 10% and more. At that point Jacob expressed his wish to be done with treatment, and we took him home on hospice. Three days later at 5:10 am, Jacob took his last breath.
Through everything, we held on to hope that Jacob would beat this, but in our hearts we knew that wasn’t in God’s plan, so we packed a lifetime of memories in our last 10 months together. He got to go to Disney for his Make-a-Wish trip, fish in Alaska, be a member of the ground crew for a skydiving team, cheer on the UC football team from the sidelines, and then see them get creamed in the Sugar Bowl. He got to see an NFL playoff game and be five rows back from his football hero, Tom Brady.
Even though Jacob was only 9 years old, he was wise beyond his years. He loved reading, video games and football. He was compassionate and friendly, and whenever people speak about him they talk about how he always has a smile on his face.
Jacob was a true gift, and will be forever missed.