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Ormond Beach Observer Thursday, Sep. 26, 2019 8 months ago

Remembering Roo: Ormond Beach family wants more pediatric cancer research

The Staffords lost their 3-year-old daughter in May, and "Roo's Crew" wants to aid in preventing other families from going through the same hardship.
by: Jarleene Almenas Associate Editor

All of the Stafford children have a nickname. 

When their daughter Mikaila was born, Cory Stafford turned to his wife and asked, "what are we going to call her?" 

Amanda Stafford responded, "Kailaroo, like Kangaroo."

And from there, Mikaila became known as Roo in her large family. She was one of eight children. 

Up until March, she was a perfectly healthy child. She had celebrated her third birthday last December. The Staffords didn't know she wouldn't get to celebrate her fourth. Their life changed in 49 days.

One day mid-March, Mikaila began vomiting, and her parents took her to see a pediatrician, who at first wasn't too concerned, thinking it was a passing virus. A couple days later, Mikaila was having trouble balancing and walking, and she didn't want to eat or drink. 

Mikaila Stafford. Courtesy photo

Her pediatrician believed she was showing symptoms of ataxia, and she was airlifted to AdventHealth Orlando on March 22. Doctors had a hard time pinpointing what was wrong. The first CT scan performed on Mikaila was normal. Cancer wasn't even laid on the table as a possibility until two weeks later, following an alarming MRI that made doctors believe she had meningitis. A spinal tap was conducted, and her cerebrospinal fluid pressure was much too high. 

Doctors also found one lone cancerous cell, and that was enough to start talking about cancer.

“Everybody looks at cancer kind of different, especially doctors these days," Cory Stafford said. "It’s not unfamiliar anymore, so they treat it that way.”

Stafford, who works for B. Braun, is very familiar with the pharmaceutical and medical industry. Doctors soon a wanted a brain biopsy, but before they could perform that high-risk procedure on his daughter, Stafford wanted answers. At his insistence, a second CT scan was done on Makaila, and this time, doctors found more cancerous cells.

They went ahead with the brain biopsy, and the cells were revealed to be malignant. Mikaila was diagnosed with primitive neuroectodermal tumors without a solid mass. Her cancerous cells were free-floating, which is extremely rare. Mikaila also had leptomeningeal disease, a complication Cory Stafford described as "meningitis on steroids." 

The cells were replicating faster than the doctors could count.

“Everything happened so fast," Amanda Stafford said. "At first, it was really hard to process because there was no time …It was like running into a brick wall and ‘okay, here it is.’”

Hard decisions

Three weeks later, Mikaila was sent home on a 10% chance of survival. Doctors began talking about clinical trials, chemotherapy, radiation and St. Jude's Children's Hospital. 

Just 12 hours after being home, Mikaila got worse. She started having seizures and returned to the hospital. 

Cory Stafford recalls doctors were alarmed to see them back so quickly. That's when he started asking himself if Mikaila's cancer was terminal. Doctors hadn't used that word around them.

“In the hospital, you could see her just deteriorating," Stafford said. "You would look at her every day and she’d become more solemn. She wouldn’t talk, she wouldn’t eat.”

He was researching all the drugs being administered to Mikaila, and still has two color-coded binders of her entire medical history in those 49 days. 

The Staffords decided against radiation therapy. The oncologist told them there was a 90% chance she would die during the procedure, and that was it. They wanted to be able to take her home to see her brothers and sisters. 

Reunited with her siblings

The Staffords initiated hospice around April 14. Amanda Stafford contacted The Make-A-Wish Foundation, who suggested the family take a trip to Disney World together. 

Mikaila enjoyed meeting all the Disney characters during her trip with The Make-A-Wish Foundation. Courtesy photo

Before Mikaila got sick, the family had been planning a trip. 

Make-A-Wish brought the other Stafford children back to Florida from North Carolina, where they had been staying with the grandparents, and the family stayed at the Gives Kids The World Village in Kissimmee for five days. 

Mikaila perked up a bit for the vacation. She loved seeing the Disney Characters.

“She was smiling, she was laughing," Amanda Stafford recalls. "She was having a good time with her siblings."

Mikaila died shortly afterward, on May 9 at 10:54 p.m. She had been born at 10:54 a.m. — a coincidence that stands out to her mother.

'4% is not acceptable'

After she was gone, Amanda Stafford knew her family needed to heal. When she found out September was Childhood Cancer Awareness Month, she talked to her husband about participating in something as a family to help them process their loss. 

They decided to join Alex's Million Mile initiative by the Alex's Lemonade Stand Foundation, which encouraged supporters to log miles to collectively run, walk or cycle 1 million miles throughout September to raise awareness about childhood cancer. 

And so, "Roo's Crew" was born, and this year, their fundraising goal was $3,000. As of Sept. 26, they had surpassed it, raising $3,459.

When the Staffords discovered that only 4% of federal government cancer research funding goes to pediatric cancer, they had to get involved. 

This photo of Mikaila was taken a week before she got sick. Courtesy photo

“4% is not acceptable—especially when children are the future," Amanda Stafford said.

Cory Stafford said more research and case studies are needed in pediatric cancer. Rare diseases, like Mikaila's, are becoming more common and there is little research into what causes them. He wants studies looking at complications and knowledge on why they occur too. 

The family hopes to start a foundation someday in Mikaila's honor. 

The Staffords continue to learn about more families impacted by childhood cancer, and coupled with the loss of their daughter, Amanda Stafford said there will always be a part of them that will advocate for more research. 

“We never want any other family to have to go through what we have," she said.

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