Little 22-month-old Augie has just started learning how to run, loves music, and discovers something new every day thanks to his handy glasses. He’ll scan up and down the grocery store aisles with his mom, Katie, amazed by the brilliant colors. It’s small moments like this that Augie’s family is grateful for ever since he was diagnosed with Bilateral Retinoblastoma, a rare pediatric cancer in the eye.
“Childhood cancer affects every aspect of your life,” Katie shares, recalling when Augie was diagnosed at just five months old. “You have to put a lot on hold, and the whole family grieves the loss of childhood and normalcy. Luckily for us, we had ASK Childhood Cancer Foundation to support us through some of our darkest hours.”
Katie is a pediatric physical therapist and routinely conducts visual screenings on children. Her instincts kicked in shortly after she noticed Augie looking to his left side more than the right and observed shaky movements in both eyes.
Their appointment with an ophthalmologist confirmed Katie’s worst fears: cancerous tumors. They were sent to Duke Hospital to start Augie’s treatment the next day.
Augie’s treatment included intra-arterial chemotherapy (localized to the back of his eyes) to shrink the tumors, followed up with systemic chemotherapy (whole body) at the Children’s Hospital of Philadelphia. Thankfully, the tumors have stabilized, and everyone is hopeful that Augie’s eyesight (which is already exceeding expectations!) will gradually improve as he continues to be monitored frequently by the retinoblastoma specialists in Philadelphia and supported by the ASK Clinic at the Children’s Hospital of Richmond at VCU.
“We didn’t get connected with ASK for the first few months after his diagnosis, but once they found out about us they immediately started supporting our entire family in the ways that each of us needed them,” Katie recalls.
“Augie had blood and platelet transfusions at CHoR, and ASK was there to share programs and services that we didn’t even know existed. They knew what we needed in terms of psycho-social support before we did,” Katie continues. Augie’s family especially enjoyed ASK’s holiday events, a zoo trip, and sibling-specific programs for his three older sisters.
“His sisters Josey (15), Teresa (12), and Clara (9) are very protective of him, and each dealt with his diagnosis in their own way,” Katie explains. “Participating in family events introduced us to others who were going through the same thing and understood what we were facing. That’s incredibly comforting and one of the things that makes ASK such a unique organization.”
“We are grateful that ASK will never leave us, as well,” Katie continues. “They say, ‘Once an ASK kid, always an ASK kid,’ and I am in awe of that. The rest of society doesn’t stay in the trenches long term, but ASK will be here for our family for a lifetime. That’s incredible!”
Augie’s family shares that his cancer diagnosis has given them a new meaning to the phrase, ‘stop and smell the roses’ – even at the grocery store. “He has shaped our family’s perspective on life and reminds us every day to slow down and enjoy the small things in life with him. We are so grateful for those opportunities!”
