Many parents describe ending treatment as almost as wrenching an experience as diagnosis. Families begin to experience the gamut of emotions—from elation to terror— months before the final day.
I had a lot of anticipatory worry—it started about six months before ending treatment. By the last day of treatment I had been worrying for months, so it was just a relief to quit.
I expected to feel a profound sense of relief when treatment ended. The six months prior to ending treatment I felt almost euphoric. But when she was finally finished, I began to be unexpectedly fearful. I just started to worry. I didn't really relax until she was a year off treatment. Now weeks go by without me thinking of relapse, although I still think of the years of leukemia treatment frequently.
The last day was traumatic. It just wasn't a celebration because it felt exactly like every other day that we had to drive for hours, wait for hours, then have painful treatments. When it was over, he was just as physically exhausted and emotionally drained as on other clinic days. I just felt numb. But then, over time, there was a gradual awakening that it was really over.
We were thrilled when treatment ended. I knew many people who felt that celebrating would jinx them; they just didn't feel safe. Well, I felt that we had won a big battle—getting through treatment—and we were going to celebrate that. If, heaven forbid, in the future we had another battle to fight, we'd deal with it. But on the last day of treatment, we were delighted.
Parents should anticipate that after years spent watching their child go through the rigors of treatment, they will have lost the feeling of a "normal" life. They may experience relapse scares, and they may need to call the doctor to describe the symptoms and be reassured.
Several months after my son ended treatment, I was driving down the street, and I started to worry that he seemed excessively tired lately. I started to feel my throat constricting, and tears sprang to my eyes. I had to pull over because I literally couldn't breathe. I had to force myself to calm down, breathe slowly, and realize that I was just having a normal attack of being petrified that he would relapse.
We live in a cool climate, but went back east during a summer heat wave to visit relatives. My daughter was a year off treatment and doing extremely well. After a few days of 100° weather, she started waking up in a bed soaked with sweat. I was terrified because she had done that at diagnosis. All of those horrible feelings washed over me, and I had to stand in the shower and sob. I called my doctor who was 3,000 miles away, and listed all the normal things: good appetite, good color, good energy level, no behavior problems, no bruising, but my voice shook when I described the sweats in an air-conditioned house. He reassured me that it was almost certainly the hot weather He said if I was too worried to enjoy my visit, he would arrange for her to get a CBC, but otherwise, just bring her by when we got back. I relaxed, didn't get the CBC, and the night sweats stopped when we got home.
With diagnosis came the awareness that life can be cruel and unpredictable. Many parents feel safe during treatment and feel that therapy is keeping the cancer away. The end of treatment leaves some parents and children feeling exposed and vulnerable. When treatment ends, parents must find a way to live with uncertainty, to find a balance between hope and reasonable worry.
The first few weeks after Casey ended treatment, I was not worried at all. The sense of relief was so great! Finally our lives weren't controlled by the disease and fevers and meds. Only once a month are we bothered by doctor office visits. It is so nice.
I remember about one month after treatment ended Casey ran a high fever. As I bathed him I told him wasn't it nice we didn't have to rush off to the hospital, he could have a fever like a normal kid! We had decided to have his port taken out in August just for that simple reason—he can run a fever and we don't have to rule out infection in the port.
Now, as his counts start to rebound, my fear is growing. Up until now there was evidence that his body still retained the drugs—now he is on his own. I'm a nervous wreck. Every bruise stands out like a neon sign. I worry on his tired days. My paranoia is not healthy, and I'm working hard to reduce it. In the meantime, I've taken a step back, relying on the survival skills learned in the early days of treatment. Today he is well and I have no control over tomorrow, so I try to relish the good health that he enjoys today. No energy I put into worrying will affect the outcome in the long run. So much easier said than done, isn't it?
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Although nobody gets a parenting manual or bible in the delivery room, it is our duty as parents to try to make our kids as well rounded, happy and confident as possible. It is a lot easier to bring up great kids than it is to try and fix problems caused by bad parenting, when our kids have become adults. Our children are all individuals - they are not our property but people in their own right.