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Survivor Interview – Lily S.

Lily is a Hodgkin’s lymphoma survivor. She discusses her relationship with her family and how she dealt with losing her hair. Her mom, Sue, talks about insurance and the importance of maintaining a treatment history.

An adult woman wearing pink and a young adult woman with short hair wearing a denim jacket are interviewed together.

I had no idea it was cancer. When they told me I had Hodgkin’s disease, that meant nothing to me. I was like, “Okay, what do we have to do to get rid of this?” I didn’t know what oncology was. And then finally when they actually said the word ‘cancer’, I was like, “Oh, okay. Well, that’s a little different.” And that’s when it really hit me, it’s cancer, that was probably the hardest part. I wasn’t really familiar with how much people survive. You more hear about people dying. That’s all I knew about. But we learned different.

Sue (Lily’s mom): I sent her back to school after her biopsy. And while she was at school that day, I went, “Oh, my God, someone’s going to tell her that she’s going to lose her hair.” Because I wanted to wait until she was feeling better. And she comes home, sure enough, first thing, “Stephanie So-and-So said I’m gonna lose my hair. Is that right?” I said, “Well, yeah, probably.” And she just got hysterical. I just looked at her and I thought what can I say? What can I say? And finally I said, “You’re more important than your hair is.” Her hair was long. She calmed down and by bedtime she was saying, “I’m gonna cut my hair short and dye it.” She had adjusted to the fact that things were gonna change.

Lily: I had no hair for about a year or half a year. My friends and family were real supportive. They got me head bandanas and I just wore bandanas all the time. And we went out and bought a bunch of hats, and I wore hats. And everybody at school was cool about it. And you get a lot of attention. But when it grew back, it was kind of cool, because it came back curly, and I’d always had straight hair. And my parents let me do crazy stuff to it. I died it pink, and then I died it blonde, and that was fun. It turned out to be a lot of fun going through different stages of hair.

When I got radiation therapy, that was kind of hard, too, because they put permanent markers on your chest and you have to go like that around for a few weeks. Then radiation causes your knuckles and your chest and back to get really dark. So my feet would be like really brown and colorless, and my knuckles looked strange, and now, I still have marks on my back and on my chest from radiation, like just strange spastic lines, but it’s not that noticeable. It’s already fading. Whenever I go out into the sun, I have to cover myself. I have to put on lots of sunscreen because I had so much radiation. In the front where I got the most radiation, I don’t tan at all. I used to tan really nicely, but it just turns red.

To go into the hospital, to be in the infusion room and see all the other children that were so much more sick than I was, wasn’t fun, but you need to see these things just to be aware of them, because some of those kids are very, very sick. It gives you more courage. You could just look around and see everybody and realize that you’ll be okay as long as you have as much courage as they do.

Sue: I’ve always taken great pains to see that my family treats their bodies well. You know, we eat good foods. We don’t eat junk.

Lily: I will take care of myself better. You know, like I already did eat really healthy just because of who my family is, but now it’s like it’s really important that I eat everything right, all the vegetables, everything good. You realize that life is really precious. I know you hear that all the time, but it really is. Sometimes you need something tragic to happen to you to really realize that. I’m more bold now, because we have this one life.

Sue: It’s just made me more scared. I feel very thankful that the outcome has been good, but you never think something like that’s gonna happen to you. It was just real hard. I’m very protective. But I also want her to have her freedom. I give her a lot of freedom. But then I sit home and chew my fingernails. I think one thing that happened was that she had to spend more time with me at a time she would liked to have been drawing away. I don’t mean she felt at the time that she needed to draw away. Most 14-year-olds would have. But she couldn’t. So she’s drawing away a little now.

Lily: That’s very true. I think that our relationship got better through the experience, definitely. We didn’t have much else to do other than have each other’s company through all the time, like sitting in the doctor’s office. Doing crossword puzzles and whatever else. But it did get better. And that’s like a critical time for mother/daughter relationship, I guess. So it made me a good kid.

I think that my sister understood the situation well enough to not get jealous tendencies. She understood that the attention they were giving me wasn’t because they liked someone better than someone else. It was because they were just trying to make my life easier for what I was going through. She never had a problem with it. She had taken classes in the medical field in high school, and so it was interesting to her. She was real upset at first. Her first two questions was, “Is she gonna die?” Her second one was, “Am I gonna get it?” I’ll never forget because she asked if it was contagious.

Sue: As far as her medical records and her treatment after she leaves home and goes as far away as New York, it’ll be a bridge I’ll cross when we come to it, but I’m aware that it’s a problem. In fact, right now, she is behind on her checkups, because the company my husband works for changed insurance companies, and so we couldn’t go to Texas Children’s anymore and have it paid for. We have to change to M. D. Anderson. I just haven’t called them up and said, “Here’s our situation. What do we do next?” But I have gone to Texas Children’s already and gotten her entire packet of everything they did to her, for her, with her.

It helps to study your insurance policy and be sure what steps you need to take. We had the kind of insurance where everything had to have a referral or they’d charge you a larger amount. I’d call my insurance broker that works with my husband’s company, say, “This is what we had done on those days.” And it just helps to have all that written down. It also helps to study your insurance policy and be sure what steps you need to take. As soon as you find out that you’re gonna be treated, find out how to work with your insurance company.

Sue: Document every single thing that happens. Just write it on the calendar, like, “Today she had a CAT scan with contrast of the chest and throat.” “Today she had a gallium scan.” “Today she had a pulmonary function test.” Document that — especially if you have insurance — because later on, they never key anything right. You have to go back over much of it and say, “This is what we had done those days.” They hated me showing up with my black notebook.

Lily: She wrote down word for word everything everybody said. Then whenever they’d ask about it, she’d be like, “Let me see,” and go to the book. “This is exactly what happened.” They’d be like, “Oh, good to know. I didn’t know that.”

Survivorship to me means that something was trying to keep me from living my life, but I did whatever it took to get over it, and that’s what happened with cancer. I just did whatever it took, because I wasn’t ready. Most people who get cancer aren’t just gonna give up like that, and that’s how they survive.

Sue: Survivorship makes me very happy that we live in modern days when they can treat this disease, and that we lived in Houston where I trust the Medical Center to handle cancer more than any place I know about in the United States. It makes you grateful for good health.

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