Camden Green: Fighting Childhood Cancer with Entrectinib
A message from Steve and Kathrine Green, Cami’s parents.
In June 2018, we were told that our four-year old daughter Cami had a brain tumor and that she had just three to six months to live. We were devastated but refused to give up hope. Testing of the tumor for genetic alterations matched Cami with an oral treatment called entrectinib (Rozlytrek) that was being tested in a clinical trial. We enrolled Cami in the trial, and the results have been amazing. There is no evidence of cancer by MRI, and other than some minor side effects, Cami is healthy and happy.
Our world was turned upside down over the course of a few weeks in the summer of 2018. Cami was an energetic child who loved singing and dancing. Then, one evening, she felt unwell going to bed and spent the night throwing up. We weren’t too concerned but when we checked on her around 5 a.m. the next morning, she was blue and unresponsive.
We immediately called 911. As Steve was holding Cami while we waited for the ambulance, her body stiffened, and she seemed to be having a seizure.
Steve rode with Cami in the ambulance to the local hospital. They were rushed to the emergency room where 15 to 20 health care professionals were waiting for Cami. The hospital chaplain came over after a minute or two, and we feared the worst.
Fortunately, the doctors were able to stabilize Cami and we breathed a massive sigh of relief, but it was just the beginning of our journey.
The last in a series of tests and scans at the local hospital was an MRI. The news was bad, there were three to five areas of concern in Cami’s brain, and even though multiple radiologists had looked at the MRI, the doctors did not know what was wrong.
We took Cami to the University of North Carolina at Chapel Hill to find answers. Finally, after two weeks, during which we kept getting worse and worse news, we learned that Cami had a brain tumor called a high-grade glioma. We were told that she had three to six months to live. We were also told that whole-brain radiotherapy might add a year to Cami’s life but that we should consider just going home and enjoying the time we had left with Cami rather than putting her through this harsh treatment.
We didn’t give up. We reached out to everyone we could think of and traveled to different children’s hospitals seeking advice from the best minds in pediatric oncology. All this brainstorming led us to move forward along two paths. First, we followed a friend’s advice and asked the doctors to send a sample of Cami’s tumors for genetic profiling. Second, we considered a clinical trial that would involve brain surgery to debulk the tumors, followed by chemotherapy, then radiotherapy, and then a stem-cell therapy. The doctors told us this trial would give Cami a 10 percent chance of survival.
Just 72 hours before Cami was scheduled to have the debulking surgery, we got a call from a pediatric neurooncologist at St. Jude Children’s Research Hospital. He had received results from the genetic profiling of the tumors, which showed that they had a genetic alteration called a ROS1 fusion. He told us that there was a clinical trial testing a treatment targeting tumors characterized by ROS1 fusions and that the treatment would consist of taking two pills a day for three years. The treatment plan seemed so simple that we immediately chose that clinical trial over the one that involved surgery.
Cami has been taking entrectinib for two years. Before she began the treatment, brain MRIs showed three obvious tumors and two other areas of concern. Within three months of starting entrectinib, the three tumors had disappeared. These tumors have not recurred, and the other two areas of concern have not changed at all, so the doctors aren’t sure if they are tumors.
Cami experiences two main side effects as a result of taking entrectinib. She has gained weight and has problems with her bones, which fracture very easily. She doesn’t feel pain when the fractures happen, so we even had a time when she was walking, jumping, and dancing with two broken femurs!
Despite the fractures, Cami is having fun and living life to the full. We could not be more grateful to all the researchers who played a part in developing entrectinib and all the health care professionals who played a part in caring for Cami. We want Congress to know that funding for research gave Cami a fighting chance at life, and every family deserves this chance.