Owen: ‘You never think it will happen to you.’

Thank you to Jennifer M. of Bucks County, Pennsylvania for sharing her son’s and family’s story.

You never think it will happen to you. You have this beautiful baby and everything seems so perfect. We had six months of absolute perfection as we enjoyed life with our baby boy and daughters. Then, one day, we noticed that Owen had fluid bulging from the top of his head and was having difficulty holding his head upright.

Owen was rushed to The Children’s Hospital of Philadelphia with hydrocephalus and underwent numerous imaging studies that confirmed our worst nightmare. Owen had a rare form of brain cancer, a disseminated oligodendroglial-like leptomeningeal tumor.

That one trip to the emergency room turned into fourteen days in the pediatric ICU at CHOP and included two brain surgeries to implant a shunt, a biopsy of the tumor, multiple imaging studies with anesthesia, and surgery to implant a chemo port in his chest. Those two weeks are still a blur, but our son’s numerous scars remind us that it was very real.

Life after diagnosis has been difficult for our whole family. A brain cancer diagnosis affects everyone. February 2017 marked two years from the time of Owen’s diagnosis. During the past two years, there were periods of days or even weeks where our family was separated so that I could be in the hospital with Owen and my husband or other family members could care for our two daughters.

As parents, we kick into protective mode and just do whatever we need to do to protect our children. We put aside our own needs and put the well-being of our children first. People always ask me, as a mom, how I deal with everything. You just do. You have no choice and your child relies on you, so you put on that imaginary superhero cape and you fight for them.

Owen is now two years old and has been off chemo since May 2016. Since finishing treatment, Owen’s tumor has remained stable. He received two years of physical therapy to counteract the physical side effects of chemo. Despite being off treatment, Owen still faces challenges with his VP Shunt and has needed two revision surgeries since it was placed in 2015.

Although Owen has faced and continues to face challenges from his diagnosis, we are grateful that he has responded so well to treatment. We know that there are kids who experience debilitating side effects from treatment and surgeries to treat these tumors. I know many children diagnosed after Owen who have lost their lives to a brain tumor or suffer lifechanging side effects.

Every time we watched the chemo drip into Owen’s little body, we worried about the possible damage this “treatment” could do to our son. We wondered if we were causing him more harm than good and we were absolutely terrified to put something so toxic into his developing body.

This is why funding for research is so important. We need to find safer treatment options for these children, and we need to raise more awareness for pediatric brain tumors. We need to give kids, like my son, a fighting chance!

You can help find a cure for pediatric brain tumors. Donate today at www.curethekids.org/givenow.