Emotional responses

Parents who have children with leukemia in remission think or speak of relapse with an almost palpable dread. Just the thought can cause an eruption of the emotions that surged in them at diagnosis. The depth of the emotions generated by relapse is very hard for parents and survivors to relive and describe. As one survivor of relapse said in a shaky voice when being interviewed, "Its been eleven years since I finished treatment, but talking about it shows that you scratch the surface and those overwhelming feelings are still right there."

Parents feel a wide array of emotions at relapse: numbness, guilt, dread, anger, fear, confusion, denial, and grief. Physical symptoms such as dizziness, nausea, fainting, and shortness of breath are common. Parents wonder how they can ask their child to endure it again. They wonder how they will survive it themselves. They oscillate between optimism and panic.

I found that relapse was far worse than the original diagnosis. At diagnosis, after a certain period of adjustment, you think that treatment has a beginning, a middle, and an end. But relapse creates a bigger burden to accept. You begin to feel that maybe the disease is more powerful than the medicine. I found that for a while I just stopped functioning and thinking rationally. I felt that all the hell of treatment had been just a waste of time. I felt guilt and a tremendous sense of loss of control. I felt like I was on a runaway freight train, hurtling towards an end that didn't look so good anymore. This is the point at which people are willing to use any type of unconventional therapies, because they are desperate. I know one mom in our support group who was even willing to try coffee enemas. She looks back on it now and says, "I just went crazy."

My first relapse was the worst emotionally. Neither my parents nor I ever thought that after five years it would be back. I also had been so young when I was first treated that I didn't really think of leukemia as cancer and didn't understand that I could die from it. But at 13, I remembered clearly what I had been through, and all I could think was that it hadn't worked. I told my parents that I wouldn't do it again. My father sat me down and gave me a reality check. He explained that I would die if I didn't get treatment. He said, "If you don't do it for yourself, please do it for me and your mom." The next morning I went into the clinic and started all over again.

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