9/14 – Ollie

In the pediatric brain tumor world, there are certain diagnosis that make you lose your breath. As parents of a child with a survivable mass, these diagnosis with little to no chance of survival seem so unfair. Our journey has been rocky and challenging but we have remained focused on reaching the other side and moving from fighter to survivor. For some parents, finding a survivor with their child’s diagnosis is nearly impossible. That’s why we love to introduce people to Ollie! Read Ollie’s mother’s words about her brave little owl…

Oliver "Ollie" was 8 months old when he was diagnosed with AT/RT of the spine (a central nervous system cancer predominantly found in the brain) on April 26, 2014. He had an 8% chance of survival upon diagnosis and due to the location of the tumor we were told he would never walk even if he did survive. Ollie underwent emergency surgery to debulk the tumor and then began chemotherapy. Over the following 7 months, Ollie endured 5 rounds of chemotherapy; two that included stem cell therapy. After the second round of stem cell therapy, Ollie went into liver failure due to the harshness of the treatment. As an act of compassion an unapproved by the FDA medicine was used in an attempt to save his life and Ollie got to go home after a 2 month stay in the hospital. His body could no longer do anymore chemo. After he recovered, Ollie finished treatment with 30 rounds of radiation to his spine. In January of 2015, MRIs showed that Ollie was NED (he had no evidence of disease) and continues to be so today. Kids are never considered cancer-free due to the high percentage of relapse or secondary cancers that can occur due to treatment so this is why we say NED. We then began the long journey that we still continue today to help Ollie thrive. During treatment one of the chemos paralyzed his swallowing muscles so Ollie is gtube fed and goes to feeding therapy to help strengthen his muscles. Although he was never supposed to walk, with the help of an AFO and several surgeries and therapy, Ollie doesn't just walk, he runs and is a wild little four-year-old boy. In May, Ollie underwent surgery for a cecostomy port, an access button so that we can daily flush his nerve damaged bowels out using saline water and glycerin. Through it all, Ollie has never lost his charming smile, his easygoing spirit or his irresistible joy in the little things. We are often in awe and humbled by our miracle and we try to never take for granted the time God has given us with him. We are acutely aware that all it takes is one MRI to send us back into battle but until then we choose to not dwell in fear, and to live and love fully while also being a voice for our fellow warrior families and their brave beautiful children.

You can follow Ollie’s story on Facebook at Prayers for Ollie. https://www.facebook.com/prayersforollie/

#prayersforollie #tilleryisloved #TILfoundation #alexsmillionmile #GoGold2017

To support childhood cancer research in honor of kids like Ollie, make a donation to our team (TIL Foundation) with Alex’s Lemonade Stand Foundation. https://www.alexslemonade.org/mypage/1314958