Mother recalls the moment that changed her family forever

In the midst of the COVID-19 pandemic, the lives of the Marzilli family were changed forever. Their 6-year-old daughter, Chloe, was diagnosed with Rhabdomyosarcoma. “It happened accidentally,” says her mother, Courtney. “I noticed one night during bedtime that she had a lump on her thigh. Working in health care I thought to myself ‘kids have pronounced muscles,’ but I knew something looked abnormal.”

Within days, Courtney took Chloe to her doctor where they promptly conducted a series of tests and ultrasounds. “I could see on the technician’s face that something was going on,” Courtney recalls. “They told me that the radiologist would let me know within a few hours and by the time we got home 18 minutes later, the doctor called to deliver the news.”

On Chloe’s 7th birthday, she had her chemotherapy port placed, a bone biopsy, and her eggs retrieved. Despite all that, Courtney recalls it being a magical day. “I remember telling Chloe, you will never have another birthday with this much attention. For me as a mother, it was the worst day ever, but it was so magical for her,” she says. “We began her 42-week chemotherapy plan and started going to the Jimmy Fund Clinic every week. In the end, COVID-19 was a blessing for our family in a way, which is crazy to say. It allowed Chloe to go to school, since she and all the other children were in masks. She was immunocompromised, but the rules at school allowed for her to be like the other kids, so she didn’t miss out on things she might have had mask policies not been in place.”

Something often overlooked by adult patients and their families, which caused Courtney significant stress during treatment, was teaching Chloe how to swallow pills.

“To adults, it’s such a basic concept, but managing the nausea was really hard at first because she couldn’t swallow certain medicines,” Courtney explains. “She had lost so much weight; her team was worried she might need a feeding tube. You want to say to her ‘just swallow the pill!’ but then you remember, she’s only 7. I remember I came into the clinic and shared these concerns, and they were so amazing. A child life specialist taught Chloe how to swallow pills using this apparatus, and two weeks after practicing everything changed for her. Eventually, she was asked to help other kids who were new to treatment to learn how to swallow things, which was she was so proud to do, and I was proud as a mother to watch her help others.”

“I remember seeing our 42-week regimen and thinking to myself how are we going to do this? But you don’t have a choice; you’d do anything for your children,” Courtney continues. “While I would never wish this on anyone, we learned so much about ourselves as a family of four, as a community of people who surround and love Chloe and our family, and just so much about resiliency.”

Chloe completed her treatment in 2022 and is starting school again this September.

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