A Leukemia Diagnosis at 14: How Nicole Schulz Found Her People at City of Hope

Nicole Schulz was a high school freshman when she heard the words "you have cancer" — words that, at 14, she could only understand one way. She had never met anyone who had survived the disease.

More than 20 years later, Schulz has received treatment for acute myeloid leukemia (AML) at City of Hope through full-body radiation, two bone marrow transplants and a hospital stay that stretched 11 months without a single trip home. In the first part of this conversation with CURE, she describes the moment her diagnosis landed, the nurses who refused to treat her like a dying kid and the support system that formed when visitors stopped coming.

CURE: You were diagnosed with leukemia as a high school freshman. What do you remember most about how that diagnosis landed at that age, and what did you need from the adults around you that you may not have known how to ask for?

Nicole: When I was 14 — even being a teenager — I had never heard of or met anybody personal in my life who I knew had survived cancer. So when I heard the words "you have cancer," for me, that was a death sentence. There was no question about that for me. I immediately felt like my life was over. I remember exactly how that felt.

But what happened shortly after I was diagnosed was that the nurses at City of Hope took me from the outpatient area where I was diagnosed and admitted me as an inpatient. They treated me like, "Oh girl, you got this." They didn't look at me like they were wheeling me away to my deathbed. They didn't look at me like I was a dying kid, and it made me feel like I wasn't a dying kid. It changed my attitude so quickly.

What that actually made me notice about what I needed was when I had visitors and family members coming by after the diagnosis. People would come in and say, "I'm so sorry." I immediately thought, no, don't bring that around me. You can't look at me that way, because now I feel that way. The nurses showing me the difference in attitude set me up for so much more fight in me, because I didn't feel like I was just a dying kid. I thought, no, I can do it. They believed in me more than I believed in myself, and that made me want to fight harder.

I don't think I ever knew to ask for that until I saw the difference there. That's something I have kind of always carried through my treatment and my sickness through the years, which is that I have to be in a good mindset. So much of it is mind over matter and figuring out how to get through these tough times, especially because I've been a patient for over 20 years now. It's a long marathon. It's not just a quick sprint. I need these tools to figure out how to get through this emotionally, too, and I think having that positive energy and attitude around you is huge.

Your treatment included full-body radiation and two bone marrow transplants. Looking back, what was the hardest part of that stretch?

Both of my bone marrow transplants were very, very different experiences. My first bone marrow transplant was in 2005, and that's why I had the full-body radiation, which they don't do anymore. It was the beginning of new-school treatment for bone marrow transplants, but still the end of old school. It has come so far. It's insane.

With the full-body radiation and the side effects I was having from the transplant, I was admitted in the hospital at one point for 11 months straight without ever going home. For me, that was extremely hard, because my life had stopped, but the rest of the world outside is continuing to go. And just how sick I got during that stint was really bad. That was the hard part.

What happened with my second transplant was that, even though it was just a few years later, the treatments had already evolved a lot. I remember that gave me a lot of hope, because before my second transplant, all I ever heard about AML was that if you get it a second time, you're dead. Nobody survives it a second time. So I was terrified. But what really gave me hope was seeing, in just those few years, how far everything had already come and changed. That was really, really big for me.

What helped you get through it?

Honestly, I had really good family and friends support. But what happens when you're in for such a long period of time is that people stop coming to visit anymore, because their lives are still going. So there would be times I was all alone. I didn't have friends, visitors or family members come by. It was just my parents there for me, and my siblings rotating in and out.

Who became my support system was really my City of Hope family, as I call them now and forever: the nurses, my doctors, but also the supportive care staff, like the child life specialists. They got me through my darkest times, because again, they believed in me more than I believed in myself.

When I did not want to get out of bed and open the blinds, Tony would come in and open the blinds and say, "Girl, wake up. You're not going to be feeling sorry for yourself. Wake up. Come on." We'd go to the teen room or the playroom, where we would do group every weekday afternoon. Basically, if you're well enough to go do group therapy, we'd go and play games and paint with all the pediatric patients, because being on the pediatric floor is the best. They would just pull me out of those funks.

I also had my night nurses. Because I was in the hospital so long, I stopped realizing what was day and night, which is why I needed to open the blinds. I'd be up all night, and my nurses would just say, "Come hang out with us." I'd come out of my room, sit in a wheelchair with blankets and hang out with the nurses all night and listen to them chat. I never had to be alone, alone. I always had somebody there for me in my corner, and that always was a big relief for me.

The first few nurses who were there the day I was diagnosed and were so inspiring to me are still at City of Hope. I still see them there — Georgie, Ginger and Lisa. Every time I go back for checkups, I'll even ask to get some treatment scheduled on the pediatric floor just so I can go and see them, even though I'm not supposed to go back to pediatrics because I'm 35. They are my family. When I started competing in pageants again after being sick, they were in the crowd. It was just so much more than them medically taking care of me.

Transcript has been edited for clarity and conciseness.

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