Now 8, Joseph enjoys sunny days on
his family's boat with his dog, Henry.
This was a devastating blow. His MDS had now advanced and evolved into a form of leukemia. Based on the literature that had been published on the condition at the time, Dr. Wagner says, Joseph's odds of survival were zero. Mary had met other parents who'd lost their children and regretted that they hadn't talked with them about death. So she sat with Joseph and held his hand. "I told him that God might have a plan that he would go before us and be in Heaven with Jesus, and we would see him later, and that would be okay because he would be loved and he would be healthy. I didn't know if he understood because he was so sick and so young."
Joseph's only hope was a new strategy that Dr. Wagner had recently developed. Because he was so fragile, Joseph would have a less intense round of chemotherapy and radiation followed by a double cord-blood transplant -- meaning he would get two units of cord blood from two different babies. Having more stem cells from two donors would offer a better opportunity for one type to thrive and produce new cells.
He got the second transplants in September, and the 100 days of waiting had to start all over again. Joseph stayed on a ventilator for a week, and because it prevented him from talking, he used hand signals to communicate with his parents. "We were amazed that he wasn't freaking out," Mary says. At one point, his fever spiked to 105?F, and his blood pressure and heart rate dropped alarmingly, but after three months he was stable enough to return to the Ronald McDonald House.
The first biopsy showed that his marrow contained 50 percent of cells from each donor, but the next month one donor type had taken hold and increased to 90 percent. Two months later, Joseph's marrow contained 100 percent donor cells -- which meant that the transplant was a success. Ten months after his first treatment had begun, he was healthy enough to go back to Vermont. "We were all home for Christmas, and it was incredible," Mary remembers.
Four years later, Joseph is healthy and about to start third grade. Although the doctors prefer to say he's in remission because there's always a possibility that his disease could come back, "to us, he's cured," Mary says. All the time he spent in isolation at the hospital -- as well as the following year when he had to stay home to avoid germs -- has made him especially enthusiastic about playing with friends. "He'd be with them around the clock if he could," says Mary.
The Krupskis keep a photo album of Joseph's treatment, and one of the pages has the labels from the cord- blood units he received. Because of donor-confidentiality rules, all they know is that the stem cells that took hold came from a baby boy who would be about 9 years old now. "We're so thankful to any parents who donate their baby's cord blood," Mary says. "Joseph would have died if he didn't have a transplant within a short period of time that second time around. We still feel as grateful for his life today as we were on the day he was released from the hospital."