The cancer has made my dad and me closer. He lost his job shortly before I was diagnosed, so he was at the hospital every day and at home with me all day every day through treatment. It really made a difference because we had never spent time together. My mom told me that he was really upset when I was diagnosed. He said, “If she doesn’t get through this you’ll have no regrets, because you did all those fun things with her and I never had time.” Now my dad and I do lots of stuff together.

• • • • •

I kind of incorporated the chemotherapy into my growing independence. When I first got my license, I asked to drive out to the doctor’s office and get the treatment. My mom said, “Hey, that’s no problem. I’ll go with you the first couple of times, get you settled, then you can go on your own.” It gave me so much confidence. My mom is a rock. She was always very positive. She’s a real “Where there’s a will there’s a way,” type of person. My mom told me we needed to attack this thing, and that there was no doubt that I’d get over it. This was in 1973 when very few kids survived ALL (acute lymphoblastic leukemia), and I was high risk. If it hadn’t been for her attitude, it would have been a completely different ball game.

I was diagnosed with ALL when I was 12. My mom and I were extremely close, and our relationship just improved. She always stayed with me in the hospital. I was never alone. Extended family—grandparents, great-aunts and uncles—all pitched in. After treatment my mom became very protective. I just wanted to be a normal kid and hang out with my friends. I didn’t want to worry about the cancer. Finally by senior year she conceded and let me be more normal. She was still worrying in her mind, but let me enjoy my last year in high school. She gradually went through the process of letting go.

• • • • •

I was diagnosed with cancer as a teen and had always had a lousy home life. My stepfather was a demanding alcoholic who resented the time my mom spent with me in the hospital. My cancer caused a lot of problems between them. The minute I was 18 I moved out, got three jobs, and a place to stay. I was determined to do it on my own. I really wanted to go to college to be a nurse, and asked my parents to sign a form explaining that they didn’t have enough money to send me so that I could apply for a scholarship. They refused. So I never did go to college, but it’s still a dream of mine.

• • • • •

When my daughter was having her bone marrow transplant, I felt like we were in the trenches in Vietnam. We formed a bond that is superhuman, magical, surreal, almost holy. People who haven’t experienced it simply cannot understand the strength of that bond. It’s impossible to describe how strongly I love her. When she is criticized I get an upsurge of strong emotions—almost a fight-or-flight response.

• • • • •

I had Hodgkin’s when I was 14. I don’t know what the doctors told my parents about possible late effects. My parents told me nothing. They didn’t know if I’d live long enough to get married or have kids, so they just wanted me to have fun. As a result, they didn’t give me any guidance or enforce any rules. I went into a bad marriage. I really didn’t become a thinking, independent person until I was 25 or so.

My mother and I have always been close, but as I’ve gotten older we’ve had more problems. We have very different ideas about survivorship. Some things that I do scare the daylights out of my mom. She wants me to put it behind me—that there is magic in moving on with my life. But I think the magic, if there is any, is in discussing it, reading about it, giving back. Our definitions of how you get on with your life are different. I noticed that when I was going to the survivors group, she’d tell people that I went to encourage others. I have to cut in and say, “Mom, I also go to get some help myself.”

• • • • •

Being diagnosed with cancer—whether you are a toddler or a young adult—is a horrifying experience. But sometimes people do really nice things for you, like bring presents, or grant you a special wish, or have parties for you. It really makes you feel so loved and so special, and you save up those moments in your head because you know there will be bad days when you’ll need them. And sometimes even after treatment, on days when you really aren’t feeling well and wonder if you’ll ever feel healthy again, one of those memories will fill you up and suddenly you feel just a little bit better. And during treatment, thinking about camp or a wish can get you through chemotherapy, radiation, or surgery.

So you finish treatment. Maybe you even have a party to celebrate. But you still have to go to the hospital and get needle sticks, only without your port or line. You may still have to take medications.

Once you’re back at school, everyone may be nice, but there’s no one you can talk to. Your friends are tired of hearing about it. Your brothers or sisters or both are really tired of it! If you try talking to your parents or other adults, they may remind you of how great you’re doing and that you can get on with your life now. You see a lot less of the nice people at the hospital who helped you talk about it, like your child life therapist, social worker, nurses, chaplain.

If the special things still happen, sometimes those help. They may be the only contact you have with others who understand what you’re dealing with. But when special things are also withdrawn, often there are few if any sources of support. This can be very discouraging—especially when children grow older and have to face frightening risks like secondary cancers and other serious effects. Your friends die and you miss them, but feel guilty that you are the one who survived, yet you’re grateful that you did. You get confused and sad. You may be concerned about your future, about relationships and having kids and so forth. Every bug you catch means another round of antibiotics and a trip to the doctor because, although it’s probably just a virus going around, it could be post-splenectomy sepsis. You may still lack the energy of your peers. And yet you’re expected to forget it happened and return to the person you were before.

For the most part, my daughter is doing wonderfully. I know I should be grateful for so much, and I am. But I am having some problems. I started back to work in February of this year, but I can’t hold a job. I have no patience whatsoever with other people and their way of life. The way they whine over such trivial things drives me nuts. I ended up working at a bank that dealt with mortgages, and the pressure was great. But I didn’t feel the pressure the way others did. I told my boss, “These are just numbers we are dealing with and they can wait till tomorrow.” Then I went home to my kids. I just can’t cope with what these people call emergencies—they don’t have any idea what a real emergency is. My whole outlook on life has changed and to be honest, it is spooky!

• • • • •

Our life has returned to normal in most ways. We are having a normal school year, which is important to my daughter. Her illness has left many scars and fears with all of us, including not knowing what is going to happen tomorrow, long-term effects of chemotherapy, financial destruction that we still have not recovered from, and more.

But I also have a deeper appreciation of life. I tend to look at life differently now and enjoy the little things: a smile, a hug, watching my child act normal and be with friends. A laugh, a cry—they each have a deeper meaning. I definitely take more time to be with my children and listen and understand them. My daughter and I have a much closer relationship. Our bond is a gift as she enters her pre-teens.

I still live with my parents off and on, depending on my health. I lived on my own for 4 years as an undergraduate and for the first year of grad school. When I was diagnosed with breast cancer in February, I moved back home for the surgery and recovery. This year, I’m back at grad school Tuesday through Sunday and the other days I come home. Next semester I’ll be back in school full time and living on my own again.

• • • • •

I am 25 and had astrocytoma when I was 10. I had chemotherapy, radiation, and surgery. They ended up removing some of my vertebrae to relieve the tension, and I was in a body cast and halo for 6 months. I’m now 4’6” and in a wheelchair. I live with my mother and stepfather because I still need a lot of help.

• • • • •

Our daughter’s math skills and judgment have been affected by cranial radiation at a young age. She lived with us until her mid-20s but is now independent. We do subsidize her rent so that she can live in a safe place, because she gets a low salary from her job. After moving out she got into serious credit card debt, so now we limit her to one card with a low credit limit and check up on it to make sure it doesn’t happen again.

One nice thing about belonging to the listservs is that I print out some of the postings and give them to my mom. She went through my cancer 20 years ago on her own and it was pretty traumatic. I think it helps her to feel like she was not the only one who went through that and felt that way. Plus, it helps us because we can discuss more things. I’m interested in knowing what happened (I had cancer when I was 2) and how she felt.

• • • • •

My parents didn’t tell me I had neuroblastoma when I was an infant until I was 12 years old. Even though I remembered a few experiences, I really didn’t have a clue what it meant. It wasn’t until my own child was very sick that I gained an appreciation of what my parents went through. My parents divorced, and my own experiences as a mother helped me develop a more mature attitude and understanding about my parents’ divorce. I have a lot more appreciation for what my mother went through.