Emma Levine: Fighting Childhood Cancer with Larotrectinib

Age: 14Pleasant Valley, New York

A message from Jennifer Huber and Kevin Levine, Emma’s parents.

Our daughter Emma was diagnosed with undifferentiated soft tissue sarcoma in August 2016. By March 2018, we were preparing for the worst because chemotherapy was not keeping the cancer at bay. Then, on June 22, 2018, we got the call of a lifetime; genetic profiling of Emma’s tumor had revealed she was a candidate for a clinical trial testing a promising new treatment called larotrectinib (Vitrakvi). Within days, we had enrolled Emma in the clinical trial, and she began taking larotrectinib. It has been a miracle drug for her. As of July 31, 2019, her cancer is almost undetectable, and she is living the life of a typical teenager.

Emma’s diagnosis came in the summer after she finished fifth grade. She had been having abdominal pain, losing weight, and her Tourette syndrome symptoms had been intensifying for a few months, but none of the doctors we saw could figure out what was wrong.

At yet another visit to her pediatrician, Emma had an ultrasound. It revealed a 10-centimeter tumor on her right kidney. We went straight to the local children’s hospital, where a CT scan confirmed the devastating news: Emma had cancer. She was immediately admitted to the pediatric oncology ward, and our lives were forever changed.

Within days Emma had surgery. Because the tumor was intertwined with her kidney, her entire right kidney was removed along with the tumor.

Emma spent the rest of August in the hospital recovering from the surgery. During that time, we had an agonizing wait to find out exactly what type of cancer it was and what Emma’s treatment would be moving forward.

It turned out that the cancer was an undifferentiated soft tissue sarcoma and only in her kidney. Emma began the first of seven cycles of chemotherapy the day she was supposed to start middle school. This treatment, which Emma received alongside 26 doses of radiation to the abdomen, was brutal. Emma spent much of the next 5 months in the hospital. But at the end of it, the scans showed no evidence of cancer. She was in remission. We thought the worst was behind us and began to resume life.

Then, in November 2017, Emma’s routine check-up scan showed that the cancer had returned and this time was in Emma’s lungs. We were utterly devastated. She had stage IV cancer and the prognosis was grim.

We were advised to enjoy Christmas with Emma and then start chemotherapy in the New Year, which we did. She only managed three cycles of the chemotherapy, however, because the side effects were unbearable, and the treatment was not keeping the cancer at bay.

At this point, Emma was in emotional turmoil and we transitioned to palliative chemotherapy. This allowed Emma to be treated at home and improved her quality of life a little.

While we were meeting to discuss hospice intake, we never gave up hope. That is why we followed our local oncologists’ recommendation to have Emma’s tumor genetically profiled by researchers at Dana-Farber/Boston Children’s.

Several months later, our local oncologist called to tell us to go straight to Boston. The genetic profiling had shown that Emma’s cancer was driven by an NTRK fusion. This meant she was a candidate for a clinical trial testing an investigational treatment [larotrectinib] that was showing a lot of success against cancers caused by NTRK fusions.

Within a month of starting larotrectinib, Emma’s health began improving and her 1-month scans showed the tumors had shrunk by 50 percent. A month later, the tumors had shrunk even further.

The difference in Emma’s quality of life while taking larotrectinib and while taking chemotherapy is like night and day. Chemotherapy left Emma emaciated and weak. She could not go to school and was frequently in the hospital. Since starting larotrectinib, Emma has gained almost 30 pounds and she just enjoyed her eighth-grade dance after completing her first full year of middle school.

Emma will continue to take larotrectinib and to have regular check-up scans for many years, if not the remainder of her life.

Larotrectinib saved Emma’s life, and we are so grateful to our local oncologist and everyone at Dana-Farber/Boston Children’s, especially Dr. Janeway and Dr. DuBois. It has been a true collaboration, and we are very blessed to have such caring and dedicated people fighting in Emma’s corner with us.

The AACR was saddened to learn that Emma Levine passed away on November 2, 2020. We are deeply grateful to Emma and her parents, Jennifer and Kevin, for sharing her experience with cancer in the AACR Cancer Progress Report 2019 to help educate others and advocate for continued funding of cancer research. We send our sincere condolences to Emma’s family and friends. Emma‘s father, Kevin, sent the note below to share the news of her passing:

In late summer 2020, Emma’s doctors discovered and successfully removed a tumor on the left side of Emma’s brain. Her doctors in New York and Boston continued to collaborate on treating Emma.

In March of 2020, Emma’s brain metastasis went a little haywire, leading us down a very scary path. Once again, however, she was given a new lease on life through the latest targeted therapy. Unfortunately, this represented the last line of defense, and during her bimonthly scan on October 29, the results were not what anyone desired to hear. While another Hail Mary attempt was on tap, once we arrived in Boston, Emma’s body had other plans. Emma arrived in Boston as her normal, lovable, and chipper self, yet within 24 hours her body began to shut down. I want everyone to know that Emma did not suffer at all, and on November 2, surrounded by lots of family, she passed as peacefully and pain-free as we could have all hoped.

I know that Jen and I are hopeful that as much as possible can be learned from Emma’s journey and we want to thank all of you at the American Association for Cancer Research (AACR) for helping to tell her story. Emma was the bravest fighter I have ever known, and nobody can ever deny the level of courage she harnessed to face cancer head-on, over and over.