Home > News & Events > Feature Articles > A Mother's Story (05/01/2002)

Peggy's Son Austin Was Two When Transplanted in 2000

A Mother's Story

Austin and his mother Peggy Cash Peggy Cash's little boy Austin was in and out of the doctor's office with ear infections, bad asthma and, once, anemia. His day care providers commented on how well behaved he was. Peggy now thinks that was because he just didn't have the energy to misbehave. On February 14, 2000, after Austin had been listless all weekend, Peggy took him to his pediatrician in their hometown, Ocala, Fla. The doctor found that Austin had acute anemia and an extremely high heart rate, putting him at immediate risk for congestive heart failure. The doctor called Peggy's husband Anthony and sent them directly to Shands Hospital at the University of Florida, about 40 miles away in Gainesville, where Austin was put in the pediatric intensive care unit (ICU). There Austin was at first diagnosed with leukemia.

The Diagnosis

"We were devastated," Peggy says. "I know everybody uses that word, but it was just devastating. He was in the pediatric ICU for four days, being pumped with blood transfusion after blood transfusion." Three days after the original diagnosis, tests showed Austin actually had myelodysplasia with monosomy seven. Doctors told the Cashes that the disease rarely goes away on its own, but can be treated with a stem cell transplant.

Myelodysplasia is referred to as pre-leukemia because it can sometimes develop into leukemia. Myelodysplastic syndromes are unusual in children, appearing most often in adults over age 60. Monosomy seven means that Austin had only one chromosome seven instead of the normal pair.

When Austin was released from the hospital a few days later, weekly tests showed his red and white blood cell counts at acceptable levels, but soon they started going down, requiring that Austin get weekly blood transfusions. Austin slept with his parents in their bed, where Peggy checked his heart rate five and six times a night. A high heart rate indicated that Austin's red blood cell count was low, because the lower the red cell count, the harder his heart had to work to pump his blood. On March 25, Austin's second birthday, his parents had to rush him back to Shands. Tests showed Austin's blood counts were very low, despite a transfusion a few days before. His doctors determined that he needed a stem cell transplant.

Finding a Match

The six HLA tissue traits used to match a donor's stem cells with a patient's are inherited. Austin had no brothers or sisters to turn to as potential donors. As expected, his parents each matched only three of the six HLA tissue traits. Austin needed matching stem cells from an unrelated donor. For Austin, the search for a match went quickly. Shands Hospital is a National Marrow Donor Program (NMDP) transplant center. Austin's doctors searched the NMDP Registry, which contains listings of marrow and peripheral blood stem cell donors and cord blood units, for a match. Within days, they found two umbilical cord units that matched Austin for five of six traits and selected one of the cords.

Peggy says their doctor talked about an umbilical cord blood transplant from the beginning. Cord blood units have fewer cells and so are often used for children, who, because they are smaller, may not need as large a volume of stem cells as adults. In addition, cord blood units, which are donated at birth and frozen until someone needs them, are available immediately, making them a good option for a patient whose need is urgent. Peggy believes time was an important factor. "Austin was living on blood transfusions," she says. "The doctors didn't say that outright, but that's how it looked to me. He was making no more white or red blood cells on his own, as far as I could see."

Preparing for the Transplant

To prepare Austin for the transplant, doctors had to suppress his immune system. He received five days of radiation, then seven days of chemotherapy, followed by three days of injections of antithymocyte globulin (ATG), a powerful immune system suppressant. But Austin had an allergic reaction to the type of ATG used. The next day doctors tried another type of ATG, but Austin was allergic to that as well. Finally, high doses of steroids were used to suppress Austin's immune system.

Peggy recalls the day of the transplant, May 8, 2000: "The cord blood came in an extra large syringe, and the nurse put it in the IV line, timing it on the clock, because it's been frozen, and the cells only stay good for so long. It was sort of anticlimactic when the transplant took place. We never thought it would be just like a regular blood transfusion."

Recovery

Austin was in the hospital for five weeks and one day. Peggy stayed with him the entire time, sleeping with him in his hospital bed and holding him through the night. It felt like a long time as they waited for Austin's white blood cell counts to reach the level indicating the transplant had successfully engrafted. Each night around 3 a.m., a nurse would come in and post Austin's cell counts for the day, and Peggy would get up and stare and stare at them, looking for signs of progress. For 21 days, Austin's white cell count remained at zero. The night the nurse said that Austin finally had a white cell count, Peggy woke her husband and they jumped up and down, they were so happy.

The label on the umbilical cord unit that saved Austin's life was dated February 1997, making the stem cells older than Austin himself. Peggy says she is so grateful to the woman who decided to donate her child's cord blood. "Thanks to that person, my son is on earth today. My son might not be here today if not for the cord and the transplant process." She hopes communities will continue developing opportunities for more women to donate cord blood. She also hopes scientists will continue stem cell research. "My son would not be here today if not for researchers and scientists doing what they do."

A Healthy Four-Year-Old

Today, Peggy and her husband take Austin back to Shands every six months for checkups, and they continue to receive confirmation that all is well. After their ordeal, Peggy admits she can be a bit overprotective and sometimes overreacts to minor illnesses and scrapes -- as mothers do -- but Austin is doing fine.

He loves going to the beach, riding his "big bike" with training wheels, and following his parents around with his play lawn mower when they cut the grass. Austin also collects Pez candy dispensers. He currently has 44 of them. Peggy knows exactly how many, because he likes to line them up on the table and count them over and over again. Peggy reminds herself it's a good way for Austin to learn his numbers.