From the moment Weston was born, he was adored by his parents, Emily and Shane. However, when Weston was just 7-months-old, things began to spiral out of control. Within a three week span, Weston went from a healthy, symptom free child to getting a diagnosis that would change his life.
On the way home from visiting family in Iowa, Weston began throwing up. He seemed pale, warm to the touch and fussy. Emily and Shane contacted Weston’s pediatrician and were told it was likely a virus and to wait it out. But nothing changed. They made three more trips to the doctor in just one week just to be told to keep waiting.
A mother’s intuition led them to a local ER, where he was diagnosed with an ear infection and sent home with antibiotics. Still, Weston’s condition remained the same. After three weeks, and with her husband working out of town, Emily decided to take Weston to an urgent care hoping for some answers. As soon as his bloodwork came back, the doctor came into the room and asked Emily to sit down. Weston’s white blood cell count was sky high.
“Just looking at his blood work, the doctor could tell he had cancer,” says Emily.
What AML Means for Pediatric Patients
Weston’s official diagnosis was Acute Myelogenous Leukemia (AML) — a cancer of the blood and bone marrow. AML accounts for about 18 percent of leukemia diagnoses in children, but accounts for more than 50 percent of all leukemia-related deaths. Survival rates for kids diagnosed with AML are 65-75 percent. Children who receive a stem cell transplant as part of their treatment plans have survival rates of only 40-50 percent, and for those with relapsed AML, the survival rate drops drastically to under 10 percent. Children diagnosed with AML currently have only two approved treatment options: high-dose chemotherapy and stem cell transplant.
The Treatment Plan
Within 24 hours, Weston was admitted to a hospital near the family’s home in Kansas City to begin treatment. One round of chemotherapy — that’s what Emily and Shane hoped it would take to put Weston’s cancer into remission. But it didn’t. In fact, four rounds of chemotherapy failed for Weston.
It was time to move to the second option: a bone marrow transplant. A match was found on the national bone marrow registry, but that donor declined. Doctors also failed to find a cord blood donor leaving Emily and Shane with the last remaining option — a risky parent-to-child bone marrow transplant. With no other options, Emily agreed to be Weston’s bone marrow donor.
Just four days before his first birthday, Weston underwent a successful bone marrow transplant, followed by chemotherapy. Within a month of the transplant, he was out of the hospital and continued to make progress.
But within three months, Weston relapsed. It was far too dangerous for a second bone marrow transplant. Every medical professional Emily and Shane spoke to said they’d exhausted all standard protocol options. Weston was also suffering from Graft versus host disease (GvHD), a potentially serious side effect that occurs when the donor’s cells view the patient’s healthy cells as foreign, and attack and damage them.
As a last-ditch effort, Weston received what’s nicknamed “salvage chemo,” but it did nothing to his leukemia. Weston’s little body was maxed out on all standard chemotherapies and he had experienced sepsis, infections, kidney issues and was, at one point, insulin-dependent.
Looking For a Miracle
After learning the devastating news that Weston had exhausted his treatment options, Emily contacted all the top AML hospitals, sending medical records for second opinions — ANYTHING that would benefit Weston.
During Weston’s last round of chemo, he was rushed into emergency surgery as he’d become septic and had fluid around his heart. While the family waited anxiously outside his operating room, Emily tried to keep her mind off the worst. She pulled out her phone and began scrolling through Facebook, where she came across a post that would change Weston’s life.
St. Louis Children’s Friends Board member, Kelly Pimmel, posted in a Facebook infant leukemia support group about a presentation she had just seen at the Foundation’s annual “Friends Tea.” Even though Kelly and Emily were complete strangers and their paths had only crossed in this support group, Kelly recalled seeing Emily’s posts and made sure to tag her to ensure she saw that Children’s Jeff Bednarski, MD, PhD, was looking for patients to enroll in the NK1 trial — an experimental treatment for kids with Weston’s exact kind of AML.
Emily called and left a message for Dr. Bednarski. “I rambled off his whole medical record on his voicemail,” she says. He called her back and said that Weston seemed like a good candidate and to send his medical records for review. While Weston’s doctors in Kansas City were weary of Weston surviving the trial, they said it was the family’s choice.
Emily and Shane had to make some big decisions. “We decided to put it all on the line,” says Emily, and less than a month after first learning about the trial, Weston was on the way to St. Louis to begin the NK1 trial.
A Trial is Born
While creating new immunotherapies for diseases such as AML is complex, the NK1 Trial was formed off basic scientific research at Washington University School of Medicine. Megan Cooper, MD, PhD, Director of the Clinical Immunology program at Children’s, discovered in her lab that taking Natural Killer (NK) cells and pre-exposing them to a virus allows them perform their natural killing function better when called to duty a second time. Essentially — these cells have memory.
That work captured the attention of Dr. Cooper’s husband, Todd Fehniger, MD, PhD, Professor of Medicine and Bone Marrow Transplant Specialist at Siteman Cancer Center, who knew that NK cells were particularly good at finding AML. His lab went even further in their research and after showing that human memory NK cells have a “super charged” attack against leukemia, performed the first adult trial for patients with relapsed AML. Thanks to this new treatment, 67 percent responded positively and 47 percent achieved a complete remission. These are the same patients who were told they were no longer candidates for any other therapies — the exact same news Weston and his parents received.
When Dr. Bednarski learned of the trial’s success in adults with relapsed AML, he wanted to bring the same trial to pediatric patients who have already unsuccessfully undergone a bone marrow transplant. Using NK cells from the same donor ensures the cells won’t be destroyed, since the donor and patient now share the same immune system.
The trial itself involved a round of chemotherapy to reduce the leukemia to give the NK cells the best possible advantage. Within two weeks of the start of chemotherapy, the patient receives an infusion of T cells and NK cells from the donor, which only takes a matter of minutes. After discharge, the patient and family must reside locally for three months for monitoring.
A New Chance at Life
Weston arrived in St. Louis for the trial, but his GvHD flared up during travel. Dr. Bednarski pushed on, making sure Weston was treated and healthy enough to start the trial that might finally push him into successful remission. “I knew we were in the right place just in seeing how hard Dr. Bednarski fought to get him in there,” says Emily.
The chemotherapy took a heavy toll on Weston’s little body — sending him to the Pediatric intensive care unit (PICU) on a ventilator. There was a time where he was considered the most critically ill patient in the entire hospital. “The care team prepared us for the worst-case scenario: We could lose him,” says Emily. To complicate matters, Weston had to receive his NK cell infusion within a particular timeframe. But he started to come around and Dr. Bednarski was able to successfully infuse Weston with the NK cells. Finally, Weston’s family was able to breathe a little easier, and he was moved back to the oncology unit for Christmas Day.
After a lot of ups and downs, Weston and his family received the news they so desperately had been searching for the day he was discharged from Children’s: Weston was officially in remission!
Catching up with Weston
At 3-years-old, Weston is starting to live the childhood Emily and Shane had envisioned for their son. Due to the immunosuppressant medication he’s still taking, his social interaction is extremely limited, but he’s finally able to play like other kids his age. And while he’s not out of the woods yet, he’s been in remission since January 2019, longer than ever before.
He’s faced complications along the way, and no one knows exactly what the future holds for Weston, but Dr. Bednarski and his NK1 trial have given the family hope not offered anywhere else. His mom puts it best when asked about her family’s experience with Children’s: “We are so grateful for that chance.”