Zoe's Story

“Zoe was the kind of daughter who I could have had 10 more just like her.” This is how Zoe’s mother, Danielle, refers to her. “Pregnancy was great, delivery was easy, and she rarely if ever got sick.” But that all changed when Zoe was about 11 months old. 

“She was crying all the time. She wasn’t going down for her naps like she usually did, and then things really came to a head on Thanksgiving Day.” At 14 months, Zoe just stopped walking. She even stopped crawling and simply wanted to be held all the time. “Obviously something bad had happened here, and we needed to know what was going on.”

Their pediatrician thought that it might be a bone infection, so he sent them to the pediatrics department of St. John Hospital for further testing. Blood work and a scan were ordered. Before the scan , Danielle had told the nurses that she had noticed something strange around Zoe’s eyes. It looked like small bumps. “She looked different. Something was funny.” So, while Zoe was sedated, instead of just scanning her legs, they decided to scan her entire body.

“I didn’t think she had anything more than a bone infection. They were going to give her antibiotics, and we could go home.” Only Zoe didn’t go home for another 24 days.

The scan showed something a lot more serious than a bone infection. There was a tumor in her abdomen. As a matter of fact, the bumps around Zoe’s eyes were evidence of the cancer spreading and growing right before them.

Tests showed Zoe had neuroblastoma—a form of childhood cancer that affects the nervous system. She had a tumor on her adrenal gland that was 8 centimeters across; the cancer had also spread to the bone marrow in her legs and the orbital bones around her eyes. Danielle simply asked, “What do we have to do to stop it and make her better?”

St. John belongs to the Children’s Oncology Group, which has developed protocols for children with cancer. In Zoe’s case, more tests were needed to know exactly what protocol was appropriate. After the results came back, her medical team decided that they would go with the higher risk protocol. A catheter was placed in Zoe’s chest, and chemotherapy was started.

After five rounds of chemotherapy, surgery to remove the tumor and a final round of chemo, it was then time for her stem cell transplant therapy, which kept her in the hospital for an entire month. After she returned home, she had 12 rounds of radiation treatments and then six months of antibody treatment.

During that time, Danielle says, “There are a lot of difficult things that most people don’t see and you don’t necessarily share or talk about too much, but those are just the things you have to go through.” Like the time the two of them had to shave off Zoe’s hair because it was falling out due to the radiation and was getting in her food and all over the place. A lot of tears were shed that day.

Zoe’s parents tried to keep her trips to the hospital as positive as possible so they referred to them as “going to see our friends.” And they would name off people who Zoe had made a positive connection with the last time she was in for treatment. One of those “friends” that stood out for Zoe was her nurse, “Miss Rose” who Danielle refers to as being “just wonderful.”

St. John is also committed to making visits as painless as possible. As Nurse Rose puts it, “We want the kids not to feel any pain during their procedures so we have a pediatric intensivist come to the office to provide conscious sedation. That way they don’t feel any pain, and they’re not going to remember the procedure. ” The Meade Pediatric Oncology Center, located at the Van Elslander Cancer Center offers a child-friendly atmosphere and tries to perform as many procedures as possible on an outpatient basis, with the goal of getting the kids back to being kids as quickly as possible.

While the bulk of Zoe’s treatment have ended, she still goes back every six months for scans to make sure the cancer hasn’t returned. While neuroblastoma is one of the more aggressive and dangerous cancers a child can get, right now Zoe is cancer free.

She had a little scare a while back when she complained of leg pains, but after some scans, the doctors concluded that it was just normal growing pains. As Danielle puts it with a laugh, “She does have some normal childhood ailments, too.”

And let’s hope that’s all she has to deal with from now on.