The year 2020 was not a favorite for many.
But, for the Emmons family, it was one of the best.
The week before Christmas 2019, they received multiple gifts of good news.
First, they learned that through genetic profiling, researchers had found a promising chemotherapy drug to treat the brain tumor their daughter, Zoey, then 5 months old, was battling.
Then, they learned the medicine was FDA-approved to use immediately.
“In that week, the news just kept getting better and better,” Angela Emmons, Zoey’s mother, said.
The doctor working to make all this happen for Zoey felt the same way.
When the calendar turned to 2020, things got even better.
Zoey had started taking the new oral chemotherapy medication in February.
In June, doctors hoped an MRI would show that the tumor had stabilized and not grown. They were shocked to find no signs of the tumor.
“It was a complete surprise that it was gone,” Angela said. “It was a wonderful day. Everybody always talks about what a horrible year 2020 was for them, but it was a wonderful year for us.”
The worst day
This life-changing development was welcome after a devastating diagnosis just weeks after Zoey’s birth.
She arrived July 5, 2019, after a normal, full-term pregnancy.
At Zoey’s two-week appointment, though, her head shape had noticeably changed. Zoey’s parents consulted a pediatric neurosurgeon at Helen DeVos Children’s Hospital.
An MRI revealed a massive brain tumor.
Angela, and her husband, Chris, had traveled from their home in White Pigeon, Michigan, for the appointment.
Doctors immediately admitted Zoey into the intensive care unit at Helen DeVos Children’s Hospital. Her family hadn’t packed anything and they had left Zoey’s older sister, Adley, about to turn 3, with her grandparents.
“It was a horrible feeling,” Angela said. “It was the worst day of my life.”
Later that evening, doctors placed a shunt to drain fluid from Zoey’s brain and alleviate pressure. Within days, she underwent the first of five surgeries to remove as much of the tumor as possible.
Doctors identified Zoey’s tumor as an aggressive form called a glioblastoma multiforme.
The typical treatment is radiation, but that proved too risky for a patient as young as Zoey. They opted to shrink the tumor as much as possible with chemotherapy first, then, hopefully, surgically remove the rest, Dr. Loret de Mola said.
Initial genetic profiling of the tumor through molecular testing did not reveal other treatment options.
The tumor kept growing.
Dr. Loret de Mola felt she was down to her last resort, radiation, which would pose detrimental effects to Zoey’s development. With limited options, she had a second tumor sample tested.
“It was a gamble to send it again,” she said.
New treatment options
This time, the Emmons family got their greatest Christmas gift: The test revealed an NTRK mutation in the tumor that can be targeted by an oral chemotherapy medication called larotrectinib.
Seeing no signs of the tumor on the MRI in June 2020—just months after Zoey started taking the medication—was unbelievable, even to a seasoned medical professional like Dr. Loret de Mola.
“It’s the best feeling in the world,” she said.
Follow-up MRIs every three to six months since continue to show no signs of the tumor.
Zoey’s parents administer the oral chemotherapy medication daily through a G-tube. It’s such a new medication that research has yet to show its long-term effects and what discontinuing it might mean for Zoey. Because she tolerates it with no side effects, Dr. Loret De Mola plans to keep her on it as long as possible.
The treatment is so leading-edge that before every one of Zoey’s visits, Dr. Loret de Mola revisits the latest research.
“Angela and Chris understand that I don’t know long term what it means for Zoey because nobody knows,” she said.
But, she’s very hopeful.
“Every month, every year that she gets bigger and stronger and older and she still tolerates this medicine is very good,” Dr. Loret de Mola said.
As Zoey grows, doctors gain options, including radiation treatment and other new medications.
When she’s around 5 or 6 years old, Zoey will need a cranioplasty surgery to repair her skull.
Meanwhile, speech and occupational therapy helps her thrive. Like many busy 3-year-olds, Zoey likes to jump on the trampoline.
“To see her at this point is one of the best things that has happened in my whole career. She’s radiant. She’s joyful. Getting to see her, and she’s walking and talking and telling me all her animal sounds, and doing all the things I thought she might never do,” Dr. Loret de Mola said.
These are welcome days after all that the Emmons family has been through.
For Angela and Chris, their parents have been invaluable. Their employers were very supportive. And they had each other.
“I believe my relationship with my husband just got stronger,” she said. “He was my rock through everything and I know I was for him, too.”
That has helped Zoey, too, according to Dr. Loret de Mola.
“So much of how well she is doing is because of her parents and how much they have advocated for her,” she said.