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.

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.

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.

I didn’t give away or throw away the formula for Tim’s nasogastric tube until it expired—almost 1 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 5-year mark. I know it is “magical thinking,” but a relatively harmless thing.

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 biweekly 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 1 more week, Elizabeth’s cancer would come back. Irrational, I know. Somehow they squeezed Elizabeth into the original surgery date.

I try hard to believe in the “happily ever after.” But I also try very hard to keep at least one foot firmly planted in reality. That way if that 2x4 ever takes another swing at me, I have a fairly good chance of being able to duck. That 2x4 packs quite a wallop!

Many of us get pressure from family/friends/institutions to just “move on” or to “get over it.” From my perspective as a cancer mom 6 years past my child’s bone marrow transplant, I can tell you that moving on is relative.

We have definitely moved on from the day-to-day struggle of current treatment. We don’t have to juggle a normal family life around treatments and treatment side effects. Our stress level is definitely less than a family on current treatment. Six years out, we also rarely worry about relapse. That day-to-day fear is gone. Of course the relapse monster raises its ugly head when there are fevers or unexplained tiredness, but these are few and far between.

We do deal with our daughter’s treatment-induced learning disabilities. But even these are mundane and such a part of our lives to be considered normal (at least normal for us).

From the outside, it would seem that we should move on. However, nearly losing my child 6 years ago has changed me forever. This illness nearly ruined us financially, nearly ruined our marriage, had lasting effects on the psyches of our healthy children, and shook the very core of my spiritual and emotional self. I will never be the same. I will never be the innocent I was before. I now know that no matter how good, how bad, how smart, how stupid one is, your child can die. Because of that, I can’t totally move on to the “normal” world. These feelings aren’t with me every moment of every day, but they pop up enough to know I view life differently.

Since this experience is a journey, I will feel differently in 1 year and 5 years from now. I only know where I am right now.

• • • • •

I realize that, in many ways, we have been lucky regarding our battle with cancer. Tim is still here (that is the big one). And his late effects have been much less than many kids I know of. Still, if we were really lucky, we would never have had to be in this battle at all. And I am all too aware that we are far from out of the woods. We keep reshaping our dream of what our child’s life can be, grieving as we have to let go of the dream that was, and fearing for what reshapings may need to come.

• • • • •

Joseph turned 8 a month ago and as of this morning is officially a third grader! He’s quite a contrast to the kid who felt lucky to be in kindergarten 50 percent of the time, bald and skinny and barely able to climb the stairs to get to his classroom. He’s dealing with some residual effects of those huge vincristine doses, but his newly restarted occupational therapy is helping a lot, and I only wish we’d done more in the past 2 years since he’s been off treatment. The radiation to his right eye has caused a massive cataract, which has left him able to use only his left eye, but we’re going to schedule cataract surgery in a few months and take care of that as well.

We have moved into a version of normal that certainly isn’t the same as before, but it’s a lovely place to be. It’s sweeter, if shakier, and has a much better perspective on what’s important and what the heck isn’t. We’re all more accepting and more relaxed. In the new normal, if it ain’t bad news, then it’s just fine with us. I ditched years of work and a Ph.D. dissertation to spend a year in the hospital with my kid and another year recovering, and I’ve kept expecting to feel slighted, but it just hasn’t happened.

It’s so hard to tell what life experiences are related to cancer and what aren’t. It’s really hard to tell if a difficulty has anything to do with my cancer history or if it’s something that everybody is going through. And does that distinction even matter? I’m trying to decide now whether to drift away from my many cancer-related activities. Should I stop going to the support group? Should I spend more time with my non-cancer friends? Have I gotten everything that they can give me? And have I given enough back? I’ve become almost like a mentor to the other survivors. I’ve become a big support to many of them and at times it’s stressful.

• • • • •

Elizabeth was 3 when diagnosed. In the beginning I don’t think she realized she was different. Sort of like losing a tooth: it happens to everyone eventually, but somebody has to be first. During that short period of time her innocence was intact. Then the reality hit that it wasn’t going to happen to everyone, she could die. Then Chelsea did die; Sam lost her arm; Sammie died. Her innocence is now gone.

In many ways she is different from the other kids. I remember when I was young, death was this vague thing that just didn’t seem real, it only happened to old folks. Elizabeth doesn’t have that view. Some things in life she takes very seriously. Safety issues, smoking, eating healthy, recycling, are all things that she can be quite vehement about. That is what makes her different. Her cancer experience has given her a maturity that she would not have had otherwise. And there are times when I am sad for what she has lost. But in so many more ways I’m so proud of the person she is turning into. She will be much stronger, more outspoken, more aware than I ever was.

All of that said, Elizabeth is also still very much a child. She still thinks the word “fart” is the funniest thing she has ever heard. Boys either have cooties or are her latest flame. Sleepovers are for giggling until midnight. Everything in the world should be either purple or pink. She loves to run through the woods, swing as high as the swing set will go, do flips on the monkey bars, swim until the skin threatens to peel off, and cuddle and tickle with her mom. Her world is still filled with laughter, ponytails, popsicles, and hugs. She is very much a child enjoying her childhood.

My son left for college this week and I feel great. I was really worried about it before he left. But he’s happy and he comes home weekends. He should be making friends, I guess. I talked about this with him—I asked point-blank: “Do you need friends?” and he said no, not really. He has acquaintances in his classes and I know he will be well-liked. But I said, “Well, they probably just party and drink all weekend,” and he said, “Well, they drink and party all week!” So actually I’m relieved that he comes home.

• • • • •

I’m having a hard time letting go of my 18-year-old daughter. I spent so many years and so much energy keeping her alive. I was so fearful of losing her. She’s a miracle. But now she needs her own life and can’t continue to be tied to cancer. She wants to leave it behind and she needs to move on. Part of me also wants that for her, while another part is screaming, “I can’t lose you.” Thinking of her leaving is the only thing that makes me sob, and I’m always surprised at how long the sobbing lasts.

In some ways, I was so mature so fast, and in other ways I was too dependent. For instance, I didn’t even have my driver’s license until I was 20. I really didn’t drive much until I was 25. I know the social workers thought everything went seamlessly and, on the outer surface, that was so. There were many hesitancies. I stayed close to home for college. I didn’t want to leave the clinic or my parents. In some ways, I feel like I’m still making the transition to adulthood, even though I’m 25 and married. I work with a lot of people around my age, and I’m envious. They don’t have to worry about insurance or late effects from cancer, or friends who die. So in some ways I feel like I have a normal life, and in other ways I feel quite different.

• • • • •

I had leukemia 30 years ago when I was in high school. My mother was a rock. She said, “We are going to attack this and you are going to live. Where there’s a will, there’s a way.” My grandmother was very positive too. They pounded that into me. And I’m still here. My mother was way cool about independence. She had remarkable foresight. Here I was, a teenager, sick and dependent. She taught me to drive and let me drive to doctor appointments by myself. She gradually let me go so by the time I was leaving for college, she was treating me like an adult. And I felt ready to go and mature beyond my years.

• • • • •

My transition was normal because I went away to college—4 hours from home. I don’t think that my folks thought I would leave. I didn’t show a lot of academic ambition, so it surprised them. But one day, I just decided I wanted to go and I applied to five schools. I did end up at the same college as my brother, and we even lived in the same dorm one year. In college, I made a big, fresh, new start. College was a wonderful experience for me. I had been socially awkward in grade school and high school, but in college, I made lots of friends and tried many new things. I was on cloud nine.

One aspect of transitioning to adult life is assuming control of medical decision-making. Teens change from pediatric to adult healthcare when they leave home to enter college or take a job. Many young adults do not seek out comprehensive healthcare, and for healthy individuals, this is often not a problem. But for survivors of childhood cancer who are at risk for possible late effects, difficulty in obtaining access to adult healthcare services can be serious.

I’ve always been very conscientious about my follow-up care. When I took a job far from home after college, I wanted to find a specialist to provide skilled follow-up care. I heard about a doctor from my hematologist and some friends who have had good experiences with him. I wrote a letter explaining my Hodgkin’s history and saying that if he was accepting new patients, I’d like to set up an appointment.

Well, at my first appointment, I was delighted. He knocked, instead of walking right in, introduced himself (without the Dr. in front of his name), and sat down to take the history while I was still in my regular clothes. We went over exactly what things we needed to be concerned about at this point and what I needed to do in terms of screening, infection prevention, etc., in a very reassuring, non-scary way. The way he individualized everything just felt so comforting.

• • • • •

I’m not on my parent’s insurance anymore since I’m out of college. So I don’t go to the clinic. I don’t even have a regular doctor. I’m supposed to get tests like an echo every year, but I just don’t. I guess if I get sick, I’ll find a doctor.

I’m an adult survivor of childhood cancer. I think you reach a point in your life where you need to integrate the experience so you are not just a cancer survivor, but a person who had cancer and learned something from it. I know people who still harbor a lot of anger or use the cancer history as a crutch. I still feel some pain for the part of my childhood that I lost, but I try not to let it get out of hand. I’ve realized that all humans face different crises and struggles in their lives, so my cancer experience doesn’t make me special. It should help make us more understanding of other people’s struggles. I’m old enough to realize that it wasn’t just about me. Everyone in my family was in the experience and changed by it. I like to turn it around in my mind and view it as something that gave me strength.