On January 9, 2013. Joey, just seven years old at the time, was diagnosed with medulloblastoma, an aggressive pediatric brain cancer. Five days later, our beautiful boy had surgery to remove the large tumor from the base of his brain on the brain stem. When he awoke, he could not walk and had no use of his left arm. After days in ICU he was placed on an inpatient rehab floor for several weeks enduring eight hour days of grueling therapy to learn to walk again and regain the use of his left arm.
Archives: Our Families
Our story begins in early September 2014. Our 3 year old daughter Alison spent the spring/summer of 2014 battling constipation. The very regular issue for a 3 year old took a turn for the worse when we were visiting our family in Virginia for Labor Day weekend. Ali was dealing with quite a bit of pain in her abdomen and bottom area.
Our daughter, Addison, was diagnosed with high risk neuroblastoma at eighteen months old. She had a grapefruit-sized tumor originating in her right adrenal gland, basically flattening all organs around it. Over the course of a year, she underwent six rounds of chemo, a massive abdominal tumor resection, a stem cell transplant including a one hundred day isolation, twenty rounds of proton radiation, and five out of six rounds of antibody therapy.
One Friday in January of 2014 our oldest child, Amy, who was seven at the time, came home from school feeling “not quite right.” She had a low grade fever and she was a little tired. She also had a nagging ache in her chest, which her pediatrician had attributed to growing pains for months. Amy was always an active child who loved playing with her brothers, doing gymnastics, crafts and reading. By Monday she was in the ICU at Boston Children’s Hospital and we learned that the ache was really a collapsed lung and a nine centimeter mass in her chest pushing on her lungs and heart. We were shocked. Even though Amy’s situation was already quite uncertain, we were still completely unaware of how intense the next year would be for our family.
Healthy pregnancy, healthy birth, and healthy baby—his mama and dada, Deana and Jim, were overjoyed. For the first six months, life felt like it was meant to be. Rett was by no means an easy baby, but he was thriving, aware, and simply beautiful to look at. On October 28th life changed forever as a visit to the pediatrician for what seemed to be a stomach bug turned into every parent and child’s worst nightmare. Cancer, an extremely large solid tumor, was found on his liver. He’d start chemotherapy immediately. Malignant rhabdoid tumors are nothing to scoff at, in fact, they are extremely rare and aggressive and the prognosis is dire.