August 28, 2018
Phoenix Perry is like most 7-year-old boys. He likes video games and Legos. Baseball fills his summer schedule and during the school year, he participates in gymnastics. He hopes to be a scientist someday.
Unlike most other 7-year-olds, though, Phoenix is battling a recent diagnosis of B-Cell acute lymphocytic leukemia (ALL).
Before the diagnosis
When Phoenix started experiencing leg pain in mid-May, his mom, Danielle Perry, thought it could have been a gymnastics injury. However, after repeated visits to a walk-in clinic with no relief from the pain, Phoenix had an X-ray and blood work done.
A day later, the family received a call from a provider at their clinic who said the tests were irregular, and they’d need to get from their home in Park Rapids, Minn., to Fargo or Minneapolis that night. They chose Sanford Children’s Fargo. When they arrived, they met with an internist who said the team was 99.9 percent sure that it was leukemia.
“It was like a punch in the gut,” Danielle said. “It was a very surreal moment.”
Planning for the unknown
In medicine, every patient, every situation and every diagnosis is different. Phoenix’s case was no exception.
“It was planned at the moment,” said Dr. Nathan Kobrinsky, or “Dr. K” as his patients call him, a Sanford pediatric oncologist. “People were saying we need all these things just at once, and people said, ‘OK, let’s do it for this kid.'”
Employees from a variety of departments, including pediatric oncology, anesthesiology, pathology, nursing and interventional radiology came together to get the needed work completed.
“There’s an order it all needs to be in, and that meant there needed to be tremendous flexibility from the team,” Dr. Kobrinsky said.
It was more than just the medical testing and procedures that had to happen. Keeping Phoenix and his parents informed of what was happening and why it was happening was just as important.
“Communication with the family has to be really continuous,” Dr. Kobrinsky said.
Danielle remembers trying to wrap her head around the situation.
“What it is? What does it do? Is it curable? Who gets it? Why do they get it? What can we do for Phoenix? What can we do to keep him comfortable?” she said. “It was really just a whirlwind.”
Diagnosis to treatment in fewer than 24 hours
Fewer than 24 hours after arriving at Sanford Children’s Fargo, Phoenix had a confirmed leukemia diagnosis, was set up with a personalized treatment plan and received his first round of chemotherapy.
“I couldn’t even have imagined things would move that quickly,” Danielle said. “As soon as we got to Sanford, Dr. K told us, ‘I have to get some people together, and we don’t normally have the OR (operating room) going today for this type of procedure, but I will get us some people together, and we will get this done.’”
For Dr. Kobrinsky, who has been a pediatric oncologist for more than 30 years, seeing the teamwork to make it happen made him proud.
“In the medical profession and the field of health, we aim to provide health, healing, comfort and care,” Dr. Kobrinsky said. “When everybody comes together in a crisis, it’s amazing.”
Care from those who care
“When you first hear ‘cancer,’ you’re scared,” Danielle said. “As a parent, you can’t wrap your head around that.”
The initial 24 hours from diagnosis to treatment was indeed a whirlwind, but it was made easier by a compassionate and caring team.
“They weren’t saying medical terms that we wouldn’t understand,” Danielle said. “They make sure you understand. The doctors and nurses are all about teaching and explaining, and they say no question is crazy. Ask us today, ask us tomorrow, ask us 50 times. If you have to call me in the middle of the night, you do that.
“The experience we have had at Sanford — inpatient and outpatient — that’s why we chose not to go anywhere else. We wanted care close to home, and we wanted good care obviously, and Sanford covers that.”
The road ahead
Phoenix has another 2 1/2 years of treatment to go. Dr. Kobrinsky said the next four months will be heavy treatment, but then it will be primarily outpatient.
“The next few months will certainly limit his ability to do regular kid things, but not entirely,” Dr. Kobrinsky said. “We strive to maintain normalcy. We need to pay attention to normal growth and development for kids.”
For Danielle, she knows her son is up to the challenge. She said Phoenix is happy-go-lucky, and through the treatment so far, he hasn’t lost that spark.
The bright side is, Dr. Kobrinsky added, the likelihood of him being cured is good.
“Right now, it’s a tough time, but the only way to get around something is to just go through it,” Danielle said. “Phoenix is stronger than people know. When it’s all said and done, I hope that he’s just a happy and normal kid.”
Brave Kids Bold Cures and you
Generous donors to Brave Kids Bold Cures help kids like Phoenix. BKBC is the fundraising initiative supporting kids fighting cancer at Sanford Children’s Hospital and Roger Maris Cancer Center in Fargo. Funds raised help purchase specialized equipment, further research and provide assistance to families with expenses not covered by insurance, such as meals, mileage and lodging.