In July of 2019, the O’Toole family scheduled appointments at their local dentist and oral surgeon for their daughter Julia, who had been experiencing jaw pain. While there was no issue with Julia’s teeth, the visit still had unexpected results. The staff took scans of Julia’s jaw, and upon reading the results told the O’Tooles to drive directly to Children’s Hospital of Philadelphia. This instruction came as a shock since Julia seemed to be only experiencing minor symptoms. “She was the healthiest kid in the emergency room,” Julia’s mom Heather chuckled, “She was practicing leg lifts and kicks while specialists were trying to figure out what was going on”. Julia was scheduled for a biopsy, which took two weeks to return her results and subsequent diagnosis of rhabdomyosarcoma.
While Julia started her treatment in Philadelphia, the O’Toole family was grateful that the hospital coordinated with Hershey Medical Center so that she could complete her treatments closer to home. For nine months, Julia endured weekly outpatient chemo as well as inpatient chemo every three weeks. The inpatient chemo was tough for Julia. What the family had been told would be one-night hospital stays ended up turning into at least two nights due to complications and infections from the chemotherapy. Of course, Becky, the child life service dog on the floor, made everything just a little better. Six weeks of proton radiation came next, and fortunately, the O’Tooles were given a break for Thanksgiving and were done with the treatment just before Christmas, allowing Julia to be home for the holidays.
The O’Tooles attended their first THON Weekend in February of 2020 after consulting multiple doctors on Julia’s health and safety at a crowded event. “We did the mask thing about a week before anyone else,” Heather joked. She went on to describe how that first experience shaped her view on THON, “I grew up in this area and I heard about THON on the news, but to me, it was just like ‘Oh those crazy college kids.’ I never really connected with what it was until we were a part of it. The fact that college students spend so much time and energy to help these families is really special.”
When the COVID-19 pandemic hit just after the O’Toole’s first THON Weekend, their already disrupted life was thrown for an extra curve. Julia wrapped up her treatment in the subdued environment of a hospital during the pandemic. Family and friends watched on Zoom as Julia rang the bell to celebrate the end of her treatment, which had to take place after visiting hours so that both of her parents could attend.
In June 2022, Julia got her second-year scans, and as of August 2022, she is two years in remission! Julia is paired with Volé (a Penn State dance company) and Alpha Sigma Phi, which is perfect for a young girl who loves to dance and perform on aerial silks.
“We were very excited to be paired with Vole’ because Julia has been dancing since she was 3 years old. She is now on a competitive dance team and enjoys talking to Volé members about dance rehearsals, recitals, and competitions. Members of Volé have attended Julia’s dance recitals, and we have been able to attend Volé showcases. One Volé grad even caught up with Julia at a dance competition in Philadelphia. Watching her be able to do the thing she loves with Vole’ at THON has been amazing.”
Volé and Alpha Sigma Pi are just as excited about their relationship with the O’Toole family. “We are so thankful to be paired with the Julia O’Toole family, and to have the honor of getting to know Julia,” shared a member of Volé, “Julia is incredibly creative and talented, and loves to share her interests with us. She is an amazing dancer, and as a dance organization it is so special to connect with her in that way. We love to show our support for Julia in both dance as well as her other hobbies and are so excited to see her thrive in her future passions.”
To any families beginning their journey with childhood cancer and Four Diamonds, Heather’s advice is simple: “Do everything that is offered. It makes you feel more connected as a family or as a kid. It makes you forget about cancer for a while.”
