A Father Faces the Unthinkable

Steve’s daughter was born with a rare blood disorder, which the family managed with medications for the first eight years of her life. Then doctors said the words no parent ever wants to hear.

They told Steve and his wife that without a bone marrow transplant, their daughter faced a serious possibility of the blood disorder advancing into leukemia.

They also cautioned that the transplant came with its own high risks. Although the doctors provided a recommendation, the decision ultimately was left to the parents.

“I did my best to use a decision-making process to remove emotion from the decision and make the best choice,” said Steve. “It was stressful, and you constantly question yourself, but using the decision process helped me feel I had put some rational thought into the situation.

It gave me peace of mind that I had not impulsively jumped into the decision, or been convinced by the doctor.”

The family proceeded with the transplant. Six years later, Steve’s daughter is a high school freshman “living a healthy, normal, and medication-free life.”

Taking the time to frame what the decision was really about, clarify their values, generate additional options, gather information and then predict outcomes for each option not only gave the family more control—by counteracting the debilitating sense of helplessness—but it also helped them reach a decision they felt was best for their daughter.

“In our case, I found the medical industry seemed to make decisions based on professional opinion. Often, they will state that there is limited information regarding cases of rare conditions (such as those that my daughter had), and giving a likelihood of success is impossible. But I found there is much more information available.”

(Editor’s note: “Steve” shared his story in hopes it may help others, but asked that he remain anonymous to protect his daughter’s privacy. Thus, his name is fictitious.)