Neuroblastoma Advanced Therapies Center

Neuroblastoma Advanced Therapies | Patient Story

Novel Treatments Working for Young Neuroblastoma Patient

After years of tests and treatments, neuroblastoma patient Vivian Wilson is finishing up high-risk therapy, and doctors say her prognosis looks good. She is even swimming and enjoys playing with friends and family.

Finding Answers, Finally Getting Help

Erin Wilson will never forget the day: July 13, 2017.

The day her 4-year-old daughter, Vivian, first arrived at Cincinnati Children’s. The day doctors found her tumor and the family learned about neuroblastoma.

Before that day, Erin couldn’t imagine a cancer diagnosis for her daughter. Sure, Vivian had been complaining about body aches, but Erin and her husband, Scott, who are 6-2 and 6-5, respectively, thought it was growing pains.

But when the pain persisted, the family pediatrician sent Vivian to an orthopedic doctor. She was X-rayed and her spine and legs were examined. Nothing bad was found.

After taking anti-inflammatory medicine for two weeks, Vivian felt better for a while before the pain returned and escalated so badly she couldn’t walk.

“It hurt her so bad she was in tears. We knew something was up,” said Erin.

An abdominal ultrasound at our Liberty Campus provided the answer – a tumor on her right adrenal gland.

Brian Weiss, MD, director of our Neuroblastoma Program, was at Liberty Campus that day, and his presence was, and continues to be, a calming influence for Erin.

“It was a lot to take in but [Dr. Weiss] said we’re going to send you to main campus right away for MRIs and scans,” said Erin. “We didn’t go home. We went straight there.”

Soon thereafter came the diagnosis – stage 4 high-risk neuroblastoma – and Vivian became Dr. Weiss’ latest patient.

“I had no idea what neuroblastoma was. We didn’t google anything right away,” said Erin. “We decided whatever the doctors are going to tell us, we’re going to find out.”

What is Neuroblastoma?

Neuroblastoma is a cancer of the adrenal system, the part of your body that produces adrenalin (which is the flight-or-fight hormone). It can present in many ways, depending on what part of the body is affected, including persistent bone pain, anemia, or persistent vomiting.

It is most commonly diagnosed in children under the age of 5 years.

Deviating From ‘Standard Care’ When Needed

Dr. Weiss, who is a national leader in the study of improved treatments for neuroblastoma, focuses his research on new approaches to targeting and killing neuroblastoma cells. If anyone could help Vivian, Erin knew it was Dr. Weiss and the Cincinnati Children’s team.

“He said, ‘This is what I do.’ And that was very reassuring,” said Erin. “And it gave us more peace to know that we have one of the top children’s hospitals in the country. There are people from all over the world coming here – and we’re lucky it’s in our backyard.”

Following multiple courses of treatment, with Dr. Weiss and team trying out different options, Vivian is finishing up high-risk therapy and her prognosis looks good, said Dr. Weiss.

“She is not a typical patient but she’s not that atypical either,” said Dr. Weiss. “We did a bunch of things for Viv, like adding novel therapies into her up-front cancer care – therapies such as MIBG and chemo-immuno therapy – that are not yet part of standard care, in order to give her the best chance for a cure.”

So while Vivian, 6, is not cancer-free, she’s doing better than ever before, said Erin.

She still goes to clinic every other week, and a six-month round of oral medication was added to the end of her treatment to help continue to mature the cancer cells as a precautionary measure.

“They have so much knowledge and so many different ways to treat this,” said Erin. “They were very good with monitoring and staying on top of the treatment and the precautions of what could happen. It’s very reassuring.”

Enjoying Family (And Water)

Vivian’s central line was removed from her chest in May, and she’s been having fun swimming and playing with friends and family ever since.

A long, family lake vacation gave Vivian her first chance to swim in over two years. The chilly water didn’t stop her from being the first one to cannonball into the lake.

“We’ve been having an awesome summer. She’s been swimming and enjoying all kinds of water things. She’s had such a great attitude through her treatment plan,” said Erin.

Another summer highlight was when Vivian attended the Memorial Golf Tournament near Columbus to see Tiger Woods. Vivian wore a one-piece tiger costume, and when the famous golfer spotted his young fan he walked over and gave her a fist bump.

A great moment, said Erin, and just one of many new memories the family and Vivian are making thanks to Cincinnati Children’s.

“We’re just so grateful for such an amazing hospital,” said Erin. “The people and the care – they go above and beyond for these kids. They make you feel at home.”