Remembering Cassidy Otto

Cassidy Otto was an artist, comedian, dancer and ice skater. Her mother, Kristen Otto, is a surgeon in Moffitt Cancer Center’s Head and Neck Program. She described “Cass” as a normal, happy and intelligent third grader with a love for animals, food, gardening and jiujitsu. She liked avocados, watermelon, edamame, cookies and gelato. She ran 5K races and was a fashion aficionado who visited nine countries.

In September 2019 at just 8 years old, what seemed like a common migraine was anything but for Cassidy.

“She had been having some migraine headaches every couple of weeks,” said Otto. “We took her to the pediatrician, and they thought that it was probably just a migraine but suggested  getting a baseline MRI and seeing a pediatric neurologist just to be safe. I dealt with migraines as a kid, so I thought I knew exactly what she was facing.”

Otto was in clinic the day Cassidy had her scans. Her husband, Casey, texted her with a message to call him as soon as possible.

“He told me the MRI technician came bursting in the room because she clearly saw something bad on the scan. They told him to go straight to the emergency room. At the same time, the neurologist is calling me saying it’s a tumor. It’s bad. She’s got pressure on her brain.”

The Ottos met with a neurosurgeon at St. Joseph’s Children’s Hospital who ordered more comprehensive MRIs before removing the tumor that was putting pressure on Cassidy’s brain. Two days later, after 10 hours of surgery, the MRI results had come in. The diagnosis was medulloblastoma, a common type of brain cancer found in the cerebellum. Even worse, Cassidy’s cancer had already spread to several places in her spinal cord.

EXPLORING TREATMENT OPTIONS

As a cancer surgeon, Kristen immediately started exploring treatment options.

“I looked around at that point in time and the best option that I could find was a clinical trial at St. Jude Children’s Research Hospital in Memphis,” she said. “I told my department that I’m going to Memphis with Cassidy and they said, ‘no problem, go do what you need to do.’”

Shortly after arriving in Memphis, Cassidy needed a second surgery to remove a residual tumor that was left behind. Numerous complications followed, including a bout of meningitis that kept her in intensive care for several weeks. After she recovered, she went straight on to radiation therapy for six weeks, followed by a trip back home to Tampa.

In total, Cassidy spent nearly nine months in Memphis. All the while, Kristen’s Moffitt family continued to support her from more than 800 miles away. Casey stayed home with their two other children, Ever and Indie, while they were in school.

“I mean I just was 100% shocked at the degree of support and consistent support through the whole thing,” said Kristen.

A month into Cassidy’s chemotherapy treatments, her doctors discovered her tumor not only had spread to her spinal cord but also was showing widespread bone metastases.

“We knew it was kind of dire at that point,” Kristen said, but Cassidy pressed on and ended up pushing through five months of chemotherapy. On May 26, Cassidy’s ninth birthday, further complications began causing seizures. Cassidy’s doctors believed it was caused by either a progression of her cancer in her spinal cord or spinal radiation necrosis.

“Cassidy became essentially quadriplegic,” Kristen said. “She lost her legs, and her arms were really weak. Her doctors thought at that point she may not survive. They told us it’s not a good idea to continue treatment and recommended hospice.”

A RETURN TO TAMPA

Once on hospice care, Cassidy became stable enough to return home to Tampa, which was very important to her. While the following months showed some signs of recovery and improvement, in November her trajectory once again took a downward turn.

“She was very adamant that we didn’t pursue any more treatment,” Kristen said. “She did not want to go back in the hospital. She did not want to go back on chemo. She fully understood the circumstances.”

Cassidy asked her parents if she was going to have pain.

“No,” they said. “We’re not going to let that happen. That’s what the hospice doctors are for.”

Cassidy asked if dying would hurt or be scary.

“No,” they said. “You’re going to go to heaven.”

The next day, Cassidy woke up and was happy. She had shown more strength than she had in several days. She told her little sister, Indie, she could have her bike, her toys and her virtual pets in her video game. She told her big brother, Ever, he could have her iPad.

Cassidy passed away on Christmas day.

In the days before she passed, her parents asked if she had any worries or if she was scared.

“She told us, ‘The only thing I’m worried about is that I may not be remembered,’” said Kristen. “So, we came up with a plan.”

COMMUNITY SUPPORT FOR A MEMORIAL 5K RUN

Cassidy decided she wanted her family to plant a tree for her.

“I asked her if she could sketch out what she was thinking of,” Kristen said. “And she made this pretty little garden with a fountain, pinwheel and flowers and a tree and a bench.”

Because of the COVID-19 pandemic, the Otto family wasn’t able to truly honor or celebrate Cassidy’s life, but as the number of cases started to come down in early summer, an opportunity presented itself.

“My husband and I just finally felt like we could do something for Cass and I thought, ‘Well let’s do something even more meaningful than throwing a party,’” said Kristen. “I got together with some close friends and dreamed up this idea of doing a 5K.”

The Cassidy Otto Memorial 5K was born. Runners would don bright yellow T-shirts with cartoon avocado characters that Cassidy had drawn. There would be balloons, medals and purple smoke at the starting line. Along the race, runners would even get to take a photo with a giant avocado cut out.

“I was a little nervous because I didn’t know how many people would be interested,” said Kristen. “I didn’t want to make it bigger than what I thought I could handle for this first go-round. We just put the invites out to my department and the surgeons at Moffitt and my neighbors in the community where I live.”

Olivia Luginski is a licensed clinical social worker at Moffitt, working with the Adolescent and Young Adult program. According to Luginski, the stages of grief are never going to be linear. It is a journey. It’s a reaction. The significance for Kristen to turn her loss into something that had a positive impact for others shouldn’t be understated.

“She really helped take a step in her grief journey by sharing that grief and reaching out to others and talking about it,” said Luginski. “Some parents dive into support and open up quickly. Others take a lot of time and stay private about their feelings. There’s no right or wrong way to grieve. There’s going to be emotional peaks and valleys. It’s beautiful when a parent finds acceptance and it can look like many different things. There are no guidelines to progress. Many accept it in different ways. It’s so important to find what coping strategies are out there and what works for you.”

Luginski said one of the best things a parent can do is rely on their loved ones. If you know someone such as a parent who has experienced a loss, an important way to support the

individual is to remain present, empathetic and supportive.

“You don’t need to always have the right things to say,” said Luginski. “Just being there to listen and being supportive helps. Goodbyes are painful, but they don’t have to do it alone.”

FULFILLING A PROMISE

Kristen wasn’t alone. In fact, race attendance was double what she had expected. Hundreds of family members, friends, neighbors and Moffitt team members filled the streets of her

neighborhood for the run. There were walkers, joggers and competitive runners all decked out in avocado T-shirts for Cassidy. She knew she wanted the event to be a fundraiser but was unsure at first where the money should go. So many organizations had a positive impact in Cassidy’s care.

Eventually the choice became clear.

“I was basically away from work from September 2019 to July 2020 and Moffitt just showed undying support for us,” Kristen said. “When it came time to plan this event, my husband and I were going through the options of who we could raise money for, and we decided that it would be most meaningful to give to Moffitt. They deserve it.”

Not only did the attendance exceed her expectations, but donations did too.

In total, the event raised more than $14,000 in honor of Cassidy. Much of that money came from the celebration of life that followed the race, where Cassidy’s artwork was auctioned off.

“She loved drawing and painting and coloring,” said Kristen. “We went through all of her old notebooks and sketchbooks and turned those into canvas and auctioned them. Those went for $4,000 alone. That told us that in the upcoming years we’re going to do something similar. The guests really appreciated being able to take something with them.”

The highlight of the day may not have been the avocados, the race itself or the auction. Rather, it was the fulfillment of a promise that Cassidy’s family made. Family and friends gathered around their backyard to formally dedicate Cassidy’s garden.

There were memorial speeches, songs and stories from Cassidy’s friends and family before Kristen invited guests to walk through the garden’s gravel path, to sit down at the bench next to the fountain, in front of the tree. Just like Cassidy had dreamed of in her final days.

Part of Cassidy’s ashes were spread into the fountain, ensuring she’ll always be a part of it. Kristen wears a necklace with another part of Cassidy’s ashes inside. Every night before bed she goes out to the garden to spend time with Cassidy, making sure she’s never forgotten.