Parents should anticipate that, after many months or years spent watching their child go through the rigors of treatment, they may have lost the feeling of a normal life. They may have relapse scares and may frequently need to call the doctor to describe the symptoms and be reassured.

Every time Sean sneezed, I was there with a thermometer. I was constantly on the lookout for “bad germs.” It took about a year before I was finally able to relax and stop feeling so paranoid.

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When we got back home after the transplant, I cried for a month. The boys went back to a routine and played together all the time, but I didn’t know what to do. My spouse and I had left work, left our home, left our friends, lost most of our income, and we were the only T-cell family when we were in the hospital. We didn’t have a big family and were treated far from home, so my husband and I were on our own. It was lonely and hard. I was an emotional mess when we finally got home and had the time to let our situation really sink in. It’s hard to sift through the pieces of my life and try to figure out what our future will be like from now on. I have learned to live one day at a time, and during treatment it was often one hour at a time.

With diagnosis came an acute awareness that life can be cruel and unpredictable. Many parents feel safe during treatment and feel that therapy is keeping the cancer from coming back. The end of treatment leaves many 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.

Several months after my son ended treatment, I was driving down the street, and I started to worry that Sam 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.

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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.

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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.