Elizabeth Buell-Fleming: Enjoying a Normal Childhood Thanks to Dinutuximab
A message from Martha Buell and Boyd Fleming, Elizabeth’s parents
Our daughter Elizabeth was diagnosed with high-risk neuroblastoma when she was just 2 years old. After an aggressive chemotherapy regime and an autologous bone marrow transplant, the cancer was found in her bone marrow. This made her ineligible for the clinical trial we had just enrolled her in, which was testing a groundbreaking immunotherapy called ch14.18. But her oncologists at Children’s Hospital of Philadelphia [CHOP] went to bat for her and she received the treatment through compassionate release. It is now six-and-a-half years since she finished treatment and there is no doubt in our minds that she is alive today, living the life of a normal 11-year old, because of ch14.18 [now dinutuximab (Unituxin)] and the research that led to it.
Elizabeth’s diagnosis came the day after Christmas in 2006. We had taken her to the pediatrician on Christmas Eve because she had a cold and we wanted her checked before the holidays. The pediatrician felt something unusual in her abdomen and recommended that we take Elizabeth for an ultrasound at Alfred I. duPont Hospital for Children. On the pediatrician’s advice we went that very day. We could see on the ultrasound something the size of a grapefruit. But even though we asked, “What is that?” the technician couldn’t tell us. We had to wait to find out until the doctor called.
When he called, the day after Christmas, he said, “Elizabeth has a mass on her kidney and you have to come to the emergency room now.” We had no idea what was going on. It still didn’t sink in when, after a number of tests, we were sent up to the Hematology and Oncology floor. It wasn’t until we were there that we heard the word “cancer.” It was crazy, everything had seemed normal up until that phone call and here we were, new members of a club that no one wants to be in.
A scan revealed that Elizabeth had neuroblastoma. During surgery, right after New Year’s Day, the surgeons removed the whole tumor. But because one of the four lymph nodes that they removed showed signs of cancer, the diagnosis was stage 2b. Further analysis of the tumor showed amplification of the MYC oncogene, which meant that Elizabeth had high-risk disease.
We took her to CHOP to get a second opinion on the best course of treatment. The oncologists there recommended following their new treatment protocol for high-risk neuroblastoma. Elizabeth had six rounds of induction chemotherapy, a stem cell transplant, a course of high dose cis-retinoic acid, and radiation therapy directed toward the site of the tumor.
At that point, we began considering clinical trials because we knew that being in a clinical trial was a good idea, you get better monitoring and the outcomes are often better. We chose to sign Elizabeth up for a trial that was just starting at Alfred I. duPont Hospital for Children testing whether treating with a monoclonal antibody treatment called ch14.18, at the end of the standard high-risk neuroblastoma treatment protocol would improve outcomes.
To be eligible for the trial, Elizabeth had to have no evidence of cancer in her body. To check this, she had a series of tests, including an MIBG scan and bone marrow biopsy. We were devastated when the results showed that there was cancer in Elizabeth’s bone marrow. Not only had the cancer appeared in a place where it had not been before, which meant her chance of survival had gone down dramatically, but now she would no longer be part of the clinical trial. We feared the worst.
But Elizabeth’s doctors at CHOP advocated for her to receive the monoclonal antibody through compassionate use, and we are so thankful to them for that. Elizabeth was the first patient who was not part of the clinical trial to receive ch14.18 and we absolutely believe that without it she would not be alive today. Although the ch14.18 treatments were painful, Elizabeth was lucky’she did not experience the excruciating pain that some other children do, and she was able to complete the full course.
There has been no evidence of the disease since Elizabeth finished treatment in January 2010. She is now monitored just once a year for any late effects of the treatments she received. At this point, Elizabeth has experienced no long-term problems and we are so grateful that cancer research made ch14.18 available just when Elizabeth needed it. We were on the edge of a cliff and there will never be enough words to express the feeling that we felt when we were pulled back from the edge.