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	End of Treatment The last day of treatment is a time for both celebration and fear. The protocol schedules and frequent appointments provided reassurance and structure. While most families are thrilled that the days of pills and procedures have ended, some fear a future without powerful medicines to keep the disease away. Concerns about relapse are an almost universal response and family members often feel vulnerable after active treatment ends. Many parents and survivors 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 6 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 6 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 treatment frequently. 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 and survivors should anticipate that after months or years spent going 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. With diagnosis came the awareness that life can be cruel and unpredictable. Many parents and children feel safe during treatment and feel that therapy is keeping the cancer away. The end of treatment leaves families feeling exposed and vulnerable. When treatment ends, parents and children must find ways to live with uncertainty, to find a balance between hope and reasonable worry. People forget sometimes that the toughest part of being off treatment is being off treatment! You aren't doing anything active to nail any microscopic tumor—no drugs, no zaps, no cutting, just sitting. And that can be terrifying. — I was told nothing about late effects when I was treated for Hodgkin's as a teen. The good part of that was that I had no excess anxiety. I see people come out of treatment now and they go from mentally fighting the disease to being very fearful and anxious. That's a very difficult thing. But then my ignorance caused a lot of other suffering when I tried to get good care for my late effects. Finding a balance is a very complex thing, and the way the doctor handles it from the beginning sets the tone. Meeting with Doctors and Nurses Doctors and nurses can help smooth this transition by having a meeting with the family near the end of treatment. You may have to suggest the meeting to your child's medical team, although at many centers these are routine. You may wish to make a separate appointment for this discussion so that it will not be on the actual last day of treatment. This appointment should be long enough to allow a lengthy conversation. What you should expect is: A discussion about the disease, the treatment, and possible late effects. A sense of closure to the active phase of treatment. A detailed discussion of the next steps: which doctors will see your child, the appointment schedule, whom to call with questions or concerns. A realistic but hopeful portrayal of the future. Praise for your child or teen for handling a very difficult time in her his life with grace (or courage, or whatever word is appropriate). Recognition of all of your hard work. A chance to give the physician and nurse feedback and thanks. A document (perhaps the booklet attached at the back of this book) that includes name of disease, date of diagnosis, place of treatment, total dosages of drugs, amounts of radiation, and necessary follow-up. This document will help the survivor provide all future doctors with comprehensive information on her unique medical history. An explanation of how to notify the treatment center of any change in address and/or how to share results of tests performed outside of the treatment center. An acknowledgment that you may be relieved but also fearful of the future. A discussion of any concerns. A written follow-up plan. If any of these items are not mentioned in the last meeting, ask to have another meeting or phone call to address the rest of your questions or concerns. Celebrations—or Not Some families enjoy having ceremonies to mark the end of cancer treatment. Especially for younger children who have spent much of their lives taking pills and having procedures, ceremonies can help them grasp that the most active phase of treatment is truly over and the important transition to life as a survivor is about to begin. Following are ideas from many families on how to commemorate this important occasion. Take "good-bye" pictures of the hospital and staff. Take a picture of your child or teen taking his last pill. Give trophies to your child and siblings. We had a big party during which my husband Scott stood up and called for everyone's attention. He gave a talk about how proud we were of Jeremy and handed him a big trophy. It had the victory angel on top and was engraved with "Jeremy, we are so proud of you and your victory. Love, Mom and Dad." We gave a plaque to his brother Jason for being the world's most supportive brother. Let your child throw away all the leftover pills Throw a big party for friends and family. Throw a big party at school. When Joseph finished treatment he was in kindergarten, but the kids had gone through almost an entire year with him, and they had known all about his treatments and frequent hospitalizations and had talked as a group about it when we made a presentation to the class. It seemed appropriate to have an "all done with treatment" celebration. We even had his two best friends who go to different schools come over to join us, and his big brother came down from his class to share in the fun. It was a very joyous occasion, and we made it as much like a birthday party as we could. I made cupcakes and juice, and we played games. A friend who leads the story hour at our children's bookstore came and did some songs and stories with the kids, and I even sent each classmate home with a treat bag. At the end, right before time to go home, Joseph pulled out several cans of his favorite hospital discovery, and the kids took turns blasting a shower of silly string on everyo ne else! We all clapped and cheered, and Joseph's wonderful teacher and I had a chance to have a good celebratory cry while the kids put on their things to go home. Clean-up wasn't too darn bad, and it meant a lot to all of us. There's still a tiny remnant of green silly string on one of the fluorescent light fixtures, and my big second grader likes to go down and admire it when he visits his old kindergarten teacher. Have friends and family send cards of congratulations. Go on a trip or vacation to celebrate. If consistent with your beliefs, have a religious ceremony of thanksgiving. The decision of what to do with remaining medical supplies can be problematic. Some families get rid of them immediately, some keep them until they feel more like celebrating, and others keep them forever. I didn't give away or throw away the formula for Tim's nasogastric tube until it expired—almost one year after we got it. He only had that tube in for 24 hours, but I was terrified that if we got rid of the formula he'd have to have it again. I've kept all his supplies, too. Maybe I'll get rid of them when we hit the five-year mark. I know it is "magical thinking," but a relatively harmless aspect. The parents I know have been more upset over end of treatment than they have been relieved. The "protection" of the chemo is gone. The weekly or bi-weekly visits are reduced to monthly. Also, for me, I kept my emotions in check so I could function during treatment. When treatment ended, there was enough "safe time" for it all to come out. — I couldn't get rid of those medical supplies fast enough. I boxed them up and wanted them out of the house now. I was afraid that keeping them in the house would mean that we would need them again. I was the same way when it came to having Elizabeth's central line removed. Nurse Linda told me there had been a mix-up in the surgery schedule and they were going to have to postpone Elizabeth's surgery. My hands started shaking and I began to cry. I was afraid that if it stayed in for even one more week, Elizabeth's cancer would come back. Irrational, I know. Somehow they squeezed Elizabeth into the original surgery date. As you will discover in this book, every child, parent, and relative reacts differently to the phases of treatment and survivorship. The differences do not matter. What is important is that you recognize that all of the above feelings are normal. You may be joyful, relieved, fearful, or terrified, but end of treatment is emotionally charged for every member of the family.