Back in 1983, Caron’s sweet, 5-year-old daughter Brandy was diagnosed with cancer. The previous year, doctors thought her illness was just juvenile rheumatoid arthritis. Months later, they found out how wrong they were. She was diagnosed with Stage 4 lymphoblastic lymphoma, a sister disease to leukemia. For the next three years, she was treated with a series of intensive chemotherapy. After a tough fight, she went into remission and was stable for about a year.
Just as the following March winds began to blow, so did a relapse of the disease. At that point, she relapsed with Stage 4 Acute Lymphocytic Leukemia (ALL), and doctors said her only hope would be blood stem cell transplant. The year was 1986.
There are two factors in Brandy and Caron’s story that played into the development of the C.W. Bill Young Transplantation Program and the start to NMDP/Be The Match. Brandy’s primary pediatric oncologist was Dr. Jerry Barbosa. But, a new doctor had joined forces with Brandy’s hospital – All Children’s Hospital in St. Petersburg, Florida. His name was Dr. Robert Goode, and he was helping develop a new bone marrow wing for the oncology unit. He was known to his fellow doctors as “the father of bone marrow transplantation.”
Caron’s father, Billy Spikes, on the other hand, was involved in politics, and her family had close relationships with many political figures. During Brandy’s fight, she met President Ronald Reagan, at the behest of Senator Paula Hawkins, then Vice President George H.W. Bush and Second Lady Barbara Bush. Her family also had a close relationship with Congressman C.W. Bill Young who would often visit the hospital and regularly check on Brandy’s condition.
Congressman Young wanted to help not only Caron and Brandy, but others dealing with the same kind of pain from life-threatening blood cancers and blood diseases.
Caron asked Congressman Young, “With the advent of computers and blood banks, why can’t [the doctors] merge things together to create some sort of clearing house, so it would help everyone?” He went to work on finding a solution, which would ultimately result in the C.W. Bill Young Cell Transplantation Program operated by the National Marrow Donor Program/Be The Match.
Unfortunately, at the time, the registry was in the very early stages of development. Brandy’s only option was to receive an autologous blood stem cell transplant, meaning she would be her own donor. Brandy had to travel to the University of Minnesota where she received the transplant, which was her only chance at survival. Sadly, on Mother’s Day 1987, Brandy died.
Congressman Young was one of the first phone calls Caron received, as well as condolences from the Reagans, the Bush family and many other members of Congress who had supported the legislation. In the Congressman’s address to the House floor, he mentioned Brandy—she inspired legislation that helped others find a match on the program’s registry and helped cure life-threatening diseases like her own.
Caron continues to use Brandy’s story as an opportunity to persuade policymakers to help others. She has been fearless in her advocacy. As Caron says, “They put their pants on the same way you and I do. Many of them come from humble beginnings. Everyone has a story, and politicians are no different.”