Nathan was diagnosed with a hypothalamic optic pathway glioma as a newborn, at only 2.5 months old.
He was like a typical, healthy baby prior to symptoms appearing. We had many appointments with the pediatrician and specialists when we noticed at two months that Nathan was unable to eat and gain weight. Eventually, vomiting and dehydration was an emergent concern, and we took Nathan to the pediatric ED at our local hospital in New Jersey.
Our lives forever changed that night when our sweet baby boy, was diagnosed with severe hydrocephalus and a golf-ball sized inoperable tumor in the middle of his brain. Nathan spent the next two weeks in the PICU. He had several shunt surgeries, a biopsy, and interventions to get him to a healthier place with his weight. Not only did we learn of the hydrocephalus and brain tumor that night, but we found out the next day that Nathan was blind. His optic nerves had been damaged by his tumor. This was all devastating news. We clung to our faith and had hope that God would see us through this dark time.
Back then, we had no knowledge of childhood cancer, and were in shock that we had a child with cancer.
We were in the process of moving to Smithfield, Virginia, because my husband had accepted a job as a pastor at a local church. Since Nathan was in a fragile medical state being newly diagnosed, he was unable to travel and transition by car. Nathan flew on a jet used for medical transportation and made his grand entrance to CHKD in Norfolk. VA on 4th of July weekend 2021. Nathan was hospitalized 7 long months because of multiple shunt failures, and had over 10 brain surgeries/ shunt revisions, among other surgeries.
We were blessed with wonderful nurses, doctors, and medical staff. CHKD feels like home, and we are forever thankful for the love and care Nathan received during his long hospitalization, and continues to receive today.
Nathan's brain tumor has made him medically complex and disabled. He was diagnosed during a critical time in brain development, one of the reasons his delays are severe. Nathan's tumor has caused hydrocephalus, vision impairment, sodium issues, growth and weight issues, adrenal insufficiency, severe epilepsy, cerebral palsy, and global developmental delays.
Nathan completed 15 months of chemo in October of 2022. He receives MRI's every 4 months to check for tumor growth.
Nathan continues to be an inspiration to our family and others around him. His resillence and sweet, easygoing personality enrich and brighten our lives.
Since Nathan's diagnosis, I have tried to educate myself on childhood cancer. I was appalled to learn that only 4% of government funding goes to childhood cancer research. Toxic, outdated treatments impact the quality of life for our cancer kids. Awareness and advocacy is crucial for kids with cancer to not only survive , but thrive with better treatment options.
Thank you for supporting Nathan and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.
