Acute Myelogenous Leukemia: Jordyn’s Story

JordanAt 3 years old, Jordyn is already quite the inspiration — for her family, for staff on the oncology unit at Children’s Hospital of Philadelphia, for a preschool/summer camp that is supporting CHOP in her honor and, hopefully, for many others who will participate in the 2019 Parkway Run to support CHOP’s Cancer Center.

“Jordyn has a fight ahead of her, but she’s the strongest, most inspirational person I know,” says her mother, Jenna. “She has more strength in her little body than all the adults combined.”

Jordyn is using that strength to overcome acute myelogenous leukemia (AML), the second most common blood cancer in children.

Unexplained Fever Gets Unwelcome Explanation

For Jordyn, her third fever over a couple of months in early summer 2018 raised her parents’ concern.

“The first two, there were explanations,” Jenna says. “First she had a virus, then strep. The third one, there was no reason.” That was the trigger for a hospital visit that resulted in difficult news: The toddler was diagnosed with AML a week before her second birthday. After a few days in a New Jersey hospital, she was transferred to CHOP.

“CHOP has quite the reputation, so we knew that was where we wanted her to be,” says her dad, Sam. “We were trying to get her transferred over the Fourth of July, when the insurance company wasn’t open. It was a stressful few days, but the Cancer Center intake coordinator was incredibly helpful and made it happen.”

Six Months of Inpatient Treatment

Jordyn spent most of the next six months at Children’s Hospital. She had three rounds of chemotherapy, with a week to 10 days at home between cycles. “She became close to so many of the nurses and staff on the oncology floor,” Jenna says. “Jordyn just lights up a room, and everyone knew her, not just her doctors. She had an impact on everybody.”

The family learned Jordyn’s AML had an aggressive genetic mutation, which signaled to her oncologists, Lisa Niswander, MD, PhD, and Charles Bailey, MD, PhD, that a bone marrow transplant should be part of her initial therapy.

Jordyn was part of the 70% of cancer patients who have no family member who is a match, but a unrelated donor was found to be a “10 out of 10” match, meaning all 10 of the blood markers used to test for compatibility came back as a match.

“She was Jordyn’s guardian angel,” Jenna says. “We don’t know anything except the donor was a ‘she.’ We’re so thankful she agreed to be a donor.”

The transplant happened two days before Thanksgiving, and was a success. Jordyn had engrafted 100% with the donor marrow. “We got to go home on Dec. 22, and we learned on Christmas Eve that she was in remission,” Jenna says.

A Joyful 3½ Months

For 3½ months, Jordyn got to be at typical toddler at home, playing with her big brother, Jax.

“They play together every chance they get, and he tries to include her in everything,” Jenna says. “Instinctively, when she’s not feeling good, Jax will sit close to her, hold her hand, rub her head. They’re very close.”

Unfortunately, Jordyn hasn’t been feeling great this summer. She relapsed in April, “which was a shock to everybody since she had been doing so well,” Sam says.

Drs. Niswander and Bailey restarted chemotherapy, on an outpatient basis this time. “The nurses who knew her from her inpatient stays often come over to the Buerger Center to visit her in the day hospital,” says Jenna.

Then in May, Jordyn developed a fungal infection in the sinuses near her eye and needed to be admitted to the Pediatric Intensive Care Unit (PICU) for several days. “Even in the PICU, 15 oncology nurses came to visit her,” Jenna says. “They care so much about how she’s doing.”

Chemotherapy is currently on hold while Jordyn receives medications to help fight the fungal infection, and she visits the oncology clinic several times each week for transfusions of platelets and red blood cells.

‘Don’t Ever Doubt Her Strength’

Jordyn is taking the setback in stride. “She’s a sassy ball of energy,” Jenna says. “Don’t ever doubt her strength. She’s just amazing.”

The family is excited Jordyn will be an Ambassador for this year’s Parkway Run. “We want to help CHOP in any way we can,” Jenna says.

Already, the family has been supporting the Cancer Center. Frogbridge, a preschool/summer camp in New Jersey that Jenna’s family has a long-term relationship with, knew of Jordyn’s story and asked if it could use its annual summer fundraising to help her. “Obviously, we wanted the money to go to CHOP and the Cancer Center,” Jenna says. “They called it Jordyn’s Journey in her honor.”

Presented by Chapman Auto StoresJordyn’s journey is continuing, and so is the family’s gratitude for CHOP. “Starting even before Jordyn was transferred to Philadelphia until now, everyone at CHOP has been amazing,” Jenna says. “No family wants to go through this, but we are so fortunate that CHOP is close.”