Maddison (Maddie) Major
La Plata, Md.
Battling Acute Lymphoblastic Leukemia
for More Than Half her Life
A message from Robyn Major,
My daughter Maddie was diagnosed with acute lymphoblastic
leukemia (ALL) when she was just three years old. She has been
treated with all kinds of caustic chemotherapies and head-to-toe
radiation therapy. But in January 2013, she received a therapy
unlike any other she has been treated with: a T-cell therapy that
is helping her own body fight the leukemia without serious side
It all started in 2008. As we watched the July 4th fireworks in
the summer heat, Maddie complained of being cold and tired. On
top of this, a small bruise on her hip got bigger by the day until it
looked like she had been beaten with a broom handle. Maddie’s
pediatrician suggested we take her straight to the emergency room
at Children’s National Medical Center in Washington, D.C., and blood
tests there showed she had leukemia.
A bone marrow biopsy narrowed down the type of leukemia to
B-ALL. She began the standard treatment for children with B-ALL,
which is six months of intensive chemotherapy followed by two
years of maintenance chemotherapy.
Unfortunately, Maddie’s body did not respond well to the intensive
chemotherapy. She spent two months in the intensive care unit on
a ventilator and battling two life-threatening conditions: tumor-lysis
syndrome, which caused liver failure; and sepsis, which was caused
by an infection in the blood stream. When she finally came home,
she had to relearn how to walk and talk.
Maddie, then 5, received her last dose of maintenance
chemotherapy in October 2010, but life without treatment did not
last long. We found out in February 2011, that she had relapsed.
Within days, Maddie started relapse therapy. This involved six
months of even more intense chemotherapy than she had received
previously, whole-body radiation therapy, cranial radiation, and a
bone marrow transplant.
In August 2012, at just seven years old, Maddie relapsed for a
second time. Further chemotherapy had no effect on Maddie’s
disease, and by December 2012, the doctors at Children’s National
Medical Center told us that there was not much more they could do.
We were devastated.
But a few days later, Maddie’s oncologist called and said that she
might be able to get Maddie enrolled in a clinical trial at Children’s
Hospital of Philadelphia. My first response was: You mean that
was real? Several people had sent me links to stories on the
internet about an experimental treatment at Children’s Hospital
of Philadelphia that had transformed the life of another girl with
leukemia. I hadn’t even read past the headlines thinking it was too
good to be true.
It wasn’t until after just Christmas that we went to see Dr. Grupp at
Children’s Hospital of Philadelphia. The wait had been excruciating
and we had been afraid that it would be our last Christmas with
Maddie. But the news he gave us — that the T-cell therapy might
possibly be curative — blew us away. I remember thinking, if only
we had known this 10 days ago, our Christmas would have been
In January 2013, we went back to Philadelphia so the doctors
could collect Maddie’s T cells. Then we faced another excruciating
wait, which was about three weeks, as the T cells were genetically
altered and grown in the lab. On Jan. 22nd, she got her T cells back.
With the exception of a fever, headache, and some confusion, all of
which resolved in a few days, she has experienced no side effects.
It was such a different experience to all her other treatments.
Since then, the researchers have found no sign of leukemia in her
blood or bone marrow and she is living the life she should. She
swims, takes horseback riding lessons, and will start second grade
on Aug. 19th; it will be the first time she has been in school since
February 2012, when she was in kindergarten.
Maddie’s experience has made me an advocate for research into
pediatric cancers. The drugs that are used to treat many of these
cancers are so toxic that they leave the children with a lifetime of
problems: they stunt growth and lead to learning disabilities, heart
problems, kidney problems, liver problems. These children are our
future. We need a better way, and research holds the answers.