A message from Martha Buell and Boyd Fleming,
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
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
eLizabe Th bueLL-fLeming // age 11 // WiLming Ton, deLa Ware
enJoying A noRmAl
ChilDhooD thAnKs to