- Trey was diagnosed with stage IV neuroblastoma in 2008.
- Then 2 years old, he underwent multiple rounds of treatment at a hospital near his home.
- He was in remission for nearly two years until the cancer relapsed in his brain.
- The family decided to come to Memorial Sloan Kettering, where pediatric oncologist Kim Kramer gave Trey new treatments that eliminated the remaining neuroblastoma cells.
In 2008, when Missy Love spotted a black eye on her 21-month-old son, Trey, she didn’t think much of it. After all, she thought, Trey was a toddler. He probably nicked himself on the corner of the coffee table.
But when Trey’s eye hadn’t healed a week later, she made an appointment with the family’s pediatrician outside Philadelphia — and her mother’s intuition kicked in.
“The night before the appointment I said to my husband, ‘It’s cancer. I don’t know how I know, but that’s it,’ ” she recalls.
Mike, Missy’s husband and Trey’s father, had a hard time taking her concerns seriously. Trey was a perfectly healthy child. He was bouncy, bubbly, and easygoing, which gave Missy all the more pause when Trey screamed as the pediatrician examined him the next day. She knew something must be very wrong.
The pediatrician sent the family to a Philadelphia hospital right away. Doctors there found a tumor in Trey’s adrenal gland and made a shocking diagnosis: stage IV neuroblastoma. This type of cancer affects the sympathetic nervous system, which carries messages from the brain to the body.
“I just remember for the first couple days, every time the doctor came in it was more bad news,” Missy says. “I literally had to run out of the room each time.”
But the family channeled their feelings into action fast. Trey started on an aggressive treatment regimen at the Philadelphia hospital, undergoing several rounds of chemotherapy, radiation, surgery, and stem cell transplants.
“From July 2008 to November 2009, we were pretty much living in the hospital,” Missy says.
Just in time for the holidays, though, Trey was declared cancer free. For a year and a half, he went back to being a normal kid.
A Major Setback — and a New Beginning
Then in the spring of 2011, Trey suddenly had a massive stroke that resulted in paralysis on one side of his body. The family went back to the hospital, where they learned that Trey’s neuroblastoma had relapsed to his brain — an occurrence that affects about 10 percent of young patients with this disease. Doctors performed an intensive surgery on Trey and started him on radiation therapy. From there, however, there wasn’t much else that they could do. Trey was given about six weeks to live.
Thankfully, Missy had heard from another patient’s mother that Memorial Sloan Kettering had developed an experimental treatment for children whose neuroblastoma had relapsed in the brain. MSK pediatric oncologist Kim Kramer had been treating these children with a medicine called 8H9 since 2004. The results had been nothing short of extraordinary.
“Prior to incorporating this treatment, we had no survivors of brain neuroblastoma — zero,” Dr. Kramer says. “But this has worked so well from the very beginning that some of the earliest patients who received 8H9 have been cured.”
A month after Trey’s stroke, he and his family were on their way to MSK. But they didn’t want to get their hopes up. At their first appointment with Dr. Kramer, Missy asked what kind of time frame the family could expect.
“She said, ‘Time frame? I’m not talking about a time frame — I’m talking about curing your son,’” Missy recalls.
“After the appointment, my husband and I didn’t speak,” Missy says. “We just started walking down the street. Finally, we got to the Roosevelt Island tram and said to each other, ‘She said cure, right?’ and then we both started crying.”
Getting His “Brain Juice”
Considering the other treatments Trey had withstood, receiving 8H9 was actually quite easy for him, Missy says. He had a port placed on his head so that Dr. Kramer could inject what he and his family called his “brain juice.”
“8H9 delivers liquid radiation specifically to tumor cells in the brain, sparing normal brain and spinal cord cells from toxicity,” Dr. Kramer explains. “Conventional radiation can’t do that.”
Over the summer of 2011, Trey received injections on an outpatient basis at MSK’s Pediatric Day Hospital. Once each injection was finished, Trey and his family would play tourist in New York City and always end their days at the famous toy store FAO Schwartz.
“It was actually a nice summer,” Missy says.
After he completed the treatment, Trey received an intravenous antibody medication, 3F8, to wipe out any lingering cancer cells in the rest of his body. The drug 3F8 was also pioneered at MSK. [Editor’s note: In August 2018, the version of 3F8 that’s used in people, called Hu3F8 or naxitamab, received a Breakthrough Therapy Designation from the FDA.]
Trey took an oral chemotherapy after finishing both antibodies but has been off all treatment since 2012. Ever since, his scans and bone marrow tests have shown no signs of disease. He has transitioned out of regular cancer care and only comes to MSK twice a year for visits as part of the Long-Term Follow-Up Program.
Paying It Forward
Now 10 years old, Trey is well aware of what he’s been through and channels his experience into helping others. He fundraises for pediatric cancer research at his elementary school and also regularly goes into Philadelphia with his mom to distribute bagged lunches to the homeless.
“I don’t have to tell him to do it,” Missy says. “Trey’s maturity level is higher than that of some adults. I know parents always talk about their kids as the best thing since sliced bread, but Trey really is. When you meet him, you’re different.”
These days, Trey loves hanging out with his friends and palling around with his brother Phoenix.
“There are a lot of happy things happening for this special family when it once looked like the end was in sight,” Dr. Kramer says.
And it’s also just the beginning for the treatment that saved Trey’s life. In the summer of 2017, the Food and Drug Administration gave a Breakthrough Therapy designation to burtomab, which was created and tested under the name 8H9. [Editor’s note: The name was changed from burtomab to omburtamab in December 2017.]
“This drug has successfully demonstrated substantial improvement in survival over existing conventional therapies,” Dr. Kramer says. “We now go into every situation expecting that we can successfully treat and cure neuroblastoma that has spread to the brain.”
For Missy, the progress of this drug validates everything she and her family went through.
“As a parent, you’re always thinking, Did I make the right choice?” she says. “It’s awesome to be a part of something and to know that this will go to other hospitals and other children.”