During the past year, the SARS-CoV-2 virus dominated healthcare worldwide. World Cancer Day—observed February 4—reminds us each year that for many people, the uncertainty of the COVID-19 pandemic is coupled with the uncertainty of life with cancer.
World Cancer Day is an opportunity to pause and listen to the stories of cancer survivors from across the world. In the U.S. alone, there are an estimated 15.5 million cancer survivors. Nearly 429,000 of those survivors were first diagnosed before age 20. Today, nearly 84 percent of children in the U.S. diagnosed with cancer are alive at least five years after their diagnosis. Global research aimed at better understanding the long-term effects of cancer treatment on childhood cancer survivors continues to grow, with the goal of reducing risk and improving health and quality of life.
“I’ve been in the cancer world for 15 years now,” said Nicole Schulz. “World Cancer Day is one of my favorite days of the year to get the message out—especially now during the pandemic. Everybody needs to remember that cancer doesn’t stop for it [COVID], and patients are still in need. I work with the City of Hope blood donors center, and right now we are in such a critical need for blood. People need to remember: We are still fighting. The patients are still here, and they still need us.”
Nicole, 29, was first diagnosed with acute myeloid leukemia (AML) at age 14 in 2005, on the day after Christmas. In the span of a few days, she went from being a high school freshman on the cheer team to learning that there was a 99 percent likelihood that she had leukemia.
“Fourteen-year-old me was like, okay, 99 percent, so you’re saying there’s a chance,” recalled Nicole. “I was totally having that moment where I was in denial, but the nurses at City of Hope were what really helped me in that emotional moment. Ginger and Georgie and Lisa on the pediatric floor, they are my heroes and like family to me. They really helped me to calm down, to understand the process of going through a biopsy and how that was going to find out the specific kind of cancer I had.”
The biopsy results confirmed that Nicole had an aggressive type of AML. Nicole learned that not only would she not be going home, but also that she would have to start aggressive chemotherapy immediately as a pediatric inpatient at City of Hope, a comprehensive cancer center in Los Angeles County. Before treatment was initiated, the care team discussed the potential side effects of chemotherapy with Nicole and her parents.
“Our first plan was six months of chemo, and we were going to see if that got me into remission,” said Nicole. “But then after three-and-a-half months of aggressive chemo, my counts were not going down. My cancer had become completely immune to treatment. That’s when they told me I’d need a bone marrow transplant.”
Preparation for the bone marrow transplant meant meeting with new specialists as well as receiving additional comprehensive patient and family education. “That’s when I got this fat folder of all the side effects the radiation was going to cause, because this was before targeted radiation was used for bone marrow transplant patients. It was full body radiation. All of your organs got irradiated,” Nicole said.
The discussion of side effects included the impact of treatment on reproductive health and fertility. The treatment that Nicole would receive to fight her AML would mean that, due to many factors, having biological children of her own was “off the table.” Having a thorough fertility discussion was critically important, but the reproductive consequences were difficult to accept. “Being a mom is something I always wanted,” said Nicole.
Because a bone marrow transplant was her next step, Nicole’s care transitioned to the City of Hope pediatric transplant team and Anna Pawlowska, MD, director of the hospital’s Pediatric Hematopoietic Stem Cell Transplantation Program. The allogeneic (from an unrelated donor) bone marrow transplant was successful, but after the transplant, Nicole faced a tough battle with graft-versus-host disease, which occurs when the bone marrow donor’s T-cells attack the patient’s healthy cells. Just before Thanksgiving 2006, Nicole was able to return home where a new challenge awaited: navigating her way back into life in high school.
The Childhood Survivorship Program and child life specialists at City of Hope were with Nicole and her family every step of the way. “The whole supportive care staff—they’re incredible. . . having their support for not only me, but also my family is great because, especially when I was younger and in treatment, my parents needed a lot of help navigating everything,” explained Nicole. “They needed help so they could support me. There really was a safety net around my family. . . . For kids especially, transferring back into a normal life, or trying to, is really hard and confusing. There are not a lot of people who understand it. When you do have people who understand, it really means a lot.”
But at the end of her senior year in May 2009, Nicole’s AML reoccurred. “When I relapsed, of course I knew I was going to have to have a second bone marrow transplant,” she recalled. “That’s when I gave up any hope of having a family of my own at all.”
Another allogeneic bone marrow transplant. Another struggle with graft-versus-host disease. Consistent follow-up care through the City of Hope Childhood Survivorship Program.
Fast forward to 2020. With her AML in remission for 10 years now, Nicole and her new husband Jordan were settling into married life when she came down with COVID-19.
As an engaged cancer survivor, Nicole was aware of the potential for increased risk of complications from the virus. She went to her local hospital emergency department to have bloodwork and additional testing done. When a provider entered the room and announced, “We found a surprise in your blood,” Nicole’s first thought was, “The cancer is back.”
The provider’s next words were something she never thought she’d hear: “You’re pregnant.”
The impossible was not only possible, but when she was finally able to visit her OB/GYN after two weeks of quarantine and two negative COVID-19 tests, Nicole said, “I was already through the first trimester without even knowing it, and I was past the high-risk period for miscarriage. I was like, okay, this is happening. I’m going to have this baby.”
The good news continued. Nicole reports that she felt great during her pregnancy. “I continued to do all my labs and go back for bloodwork at City of Hope to make sure everything was good,” she said. Her pregnancy care was managed by an OB/GYN, who, although not connected with City of Hope, is very familiar with Nicole’s medical history. Nicole was scheduled to deliver in early January, but that plan was revised when the baby came six weeks early. In November, after six days in the NICU, baby Kaiden went home with Nicole and Jordan. Mom, dad, and baby are all doing very well.
Life’s uncertainty is only one piece of Nicole’s story. An equally powerful piece is the importance of connection—to cancer care providers, fellow survivors, support services, family, friends, and the growing body of survivorship information. Whether it’s discussion of future fertility concerns, treatment options, or late side effects, “Being your own advocate is huge,” said Nicole. “If it is something that is really important to you, you have to fight for it and learn about your options. I have friends whose main conversation with their doctor is about saving their life, but your life after your survivorship also matters.”
World Cancer Day offers us a chance to tune into the voices of cancer survivors from around the world and learn from their lived experience: I Am. I Will. Find out what matters.
We welcome you to share our blog content. We want to connect people with the information they need. We just ask that you link back to the original post and refrain from editing the text. Any questions? Email Barbara Gabriel.