Maddie Major: Battling Acute Lymphoblastic Leukemia for More Than Half Her Life

Age: 8La Plata, Maryland

A message from Robyn Major, Maddie’s mother

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 effects.

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, now 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 the 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 much happier.

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.

The AACR was saddened to learn that Maddison (Maddie) Major passed away on Oct. 20, 2015. We are deeply grateful to Maddie’s parents for sharing her experience with acute lymphoblastic leukemia (ALL) in the AACR Cancer Progress Report 2013 to help educate others and advocate for continued funding of cancer research.

Unfortunately, not long after Maddie’s story was chronicled in 2013, her ALL returned. Although she participated in a number of clinical trials, the treatments she received put her leukemia in remission for only short periods, and we were deeply upset to learn of her passing.

We send our sincere condolences to Maddie’s family and friends.

View all Cancer Progress Report 2013 Survivors