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Carter’s Story

Carter was a happy, loving little boy. He loved to play with his toys, to flip through his books, and to watch Sesame Street. He loved to eat waffles, bananas, yogurt, sloppy joes, pizza, and cookies (especially cookies). He loved playing with his friends at day care. He loved being held and tickled by his Mommy, and loved wrestling with his Daddy. His laugh and smile were priceless.

Two days after Christmas in 2008, Carter developed a fever. Initially doctors believed he was battling an infection, but the fevers persisted, and Carter experienced increasing pain while walking or trying to stand. He refused to eat. Something was wrong.

Another week passed, and Carter’s condition continued to worsen. In that time he had spent two days in the hospital, and the doctors still believed it was an infection. One morning, with his face pale and body weak and fatigued, we became desperate, and rushed him to the emergency room.¬†Blood tests were taken. Soon after, doctors told us that our precious little boy appeared stricken with leukemia. Two days later, following a biopsy of his bone marrow, Carter was diagnosed with acute myelogenous leukemia.

From January 2009 until April 2009 he received three rounds of inpatient chemotherapy at The Cleveland Clinic. The first round produced a remission, but after the second round his leukemia relapsed, and spread quickly to his central nervous system. Carter’s doctors at the Clinic believed he needed a bone-marrow transplant, which they could not perform.

In April 2009, Carter was transferred to Cincinnati Children’s Hospital Medical Center, where we hoped he would receive a transplant. Over the next three months he underwent two additional rounds of chemotherapy, but, still, his leukemia would not respond. Carter was discharged in late July 2009 — without the transplant — and placed into hospice.

He spent the month of August 2009 at home, save for three wonderful days at Sesame Place, a Sesame Street-themed amusement park near Philadelphia. Carter was the biggest fan of Sesame Street, and had the time of his young life. He watched all the shows and the parade, played games, rode the merry-go-round, and got to meet Elmo, Ernie, Abby, and all his other Sesame Street heroes.

Shortly after our return from Philadelphia, cancerous lesions were discovered on Carter’s brain. For the next two months, he underwent radiation therapy, again as an inpatient at The Cleveland Clinic. The therapy produced a remission, Carter’s first in eight months.

In November 2009 he was transferred to Nationwide Children’s Hospital in Columbus, where, one day after his second birthday, he finally received the transplant he so badly needed. He was discharged from the hospital a few days before Christmas, and the Nedleys spent the holidays happily at The Ronald McDonald House across the street from the hospital. Carter returned home early in January 2010.

Three weeks later, however, Carter developed another fever, and spent the weekend in the hospital. Another bone marrow biopsy was performed, and revealed, tragically, that his leukemia had returned. Carter again was placed into hospice, and died peacefully at home on February 5, 2010.

Carter’s Mommy and Daddy will love him forever, and miss him terribly. They decided soon after his passing to establish a foundation in his memory to serve children battling cancer and to continue his fight against leukemia.

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