On January 22, 2009, our lives were changed forever. Our three year old son was diagnosed with a malignant brain tumor. This large tumor was blocking the flow of cerebrospinal fluid in his brain, causing terrible headaches and painful pressure that went unexplained for months. It was located at the top of his brain stem (the midbrain) and extended upward into his thalamus. We were told that the tumor was inoperable due to its location, and that chemotherapy was the only treatment choice that we had. He had surgery to relieve the pressure in his brain and to biopsy the tumor. In the weeks that followed his diagnosis, we found ourselves extremely dissatisfied with the lack of options we were given for helping our son fight this terrible disease. We did a ton of research, and found an amazing surgeon who was willing to attempt to remove Owen's tumor. On May 26, 2009, Owen spent five hours in an operating room at NYU having his second brain surgery. It was a gross total resection, and the tumor was difficult for the pathologists to classify. The pathologists at different hospitals seem to agree that the malignancy was low grade, so adjuvant therapies have not been administered to Owen at this time. Owen woke up on the way to the PICU at NYU asking for his doggy and some peace and quiet. He spent that summer working with both a physical therapist and an occupational therapist at CHOP. The only lasting deficit that resulted from the second surgery is that he has some difficulty with convergence and depth perception-side effects from the tumor being removed from his midbrain. We return to the hospital regularly for Owen to have an MRI of his brain. When he was 6 years old, Owen had 2 seizures that left him unresponsive, requiring him to be placed on anti-seizure medications. These meds will most likely be a part of his life forever. Our lives will never go back to the way they were on January 21st. Brain cancer does not allow for that. We will always worry about a recurrence.
Thanks to an incredibly skilled and aggressive surgeon, our family has hope for the future. But brain tumor research, especially the pediatric type, is grossly underfunded. Because brain tumors are considered rare, many of the treatments that exist today are the same ones that existed twenty years ago. If surgery is not an option, if a child is too young for radiation, and with chemotherapy having difficulty crossing the blood-brain barrier, the options for effective treatment are very limited. You don't realize how very scary that is until your loved one is the one who requires treatment. Since Owen was diagnosed, I have followed the stories of dozens of children suffering from various types of brain tumors. Many of those children have earned their angel wings since we started our own fight with Owen. For those children, and for Owen, we'll be participating in the Race For Hope on October 7, 2017. Owen will be participating as a timed runner again this year! We'd love for you to join us! If you can't make it to the race, please consider making a donation instead. Thank you!
National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research and advocating for public policies that meet the critical needs of the brain tumor community. Your support ensures this important work will continue.