Fertility preservation: Planning for life after cancer

Evelyn
It's not uncommon for young girls and boys to dream of becoming mommies and daddies, in addition to other aspirations. Take 5-year-old Evelyn Kelly. Her mom, Alyssa, says Evelyn loves to play mommy with her “babies”—her dolls.
 
When Evelyn was diagnosed with cancer at age 3, her treatment protocol included surgery, chemotherapy and radiation treatments—all therapies with the potential to affect a child’s future fertility. Alyssa and her husband, Kevin, enrolled Evelyn in a research protocol at Ann & Robert H. Lurie Children’s Hospital of Chicago that may enable her to preserve the ability to have children in the future.
 
Childhood therapies, long-term implications
Evelyn had a rare cancerous tumor called a rhabdomyosarcoma located in the sac around her heart. Because of the type of chemotherapy she needed, she was considered at high risk for infertility. David Walterhouse, MD, Evelyn’s oncologist at Lurie Children’s, says that when a family learns that their child has cancer, it’s essential to discuss the implications of the treatments.
 
“It can be difficult to bring the possibility of infertility into the initial discussion of treating a child’s cancer,” says Dr. Walterhouse, the George M. Eisenberg Research Scholar in Developmental Systems Biology. “The priority is treating the cancer, and often the best way to cure this disease is to use chemotherapy. Unfortunately, infertility is known to be associated with certain types of chemotherapy.”
 
The Kellys consulted with oncologist Yasmin Gosiengfiao, MD, and oncology pediatric nurse practitioner Barbara Lockart of Lurie Children’s Fertility Preservation Program, which offers a variety of options for both boys and girls. Fertility preservation is an emerging field; Lurie Children’s is one of fewer than 20 such programs nationwide, and the only one in Illinois. The team also includes pediatric surgeons, and the team’s specialists work closely with colleagues at Northwestern University Feinberg School of Medicine’s Divisions of Reproductive Endocrinology and Infertility. Lurie Children’s is also a member of the global Oncofertility Consortium based at the university.
 
Starting the conversation
Initiating the discussion about preserving fertility prior to starting treatment is important, as today more than 80 percent of children treated for cancer survive to adulthood. But of those pediatric cancer survivors, about 1 in 7 will experience fertility issues.
 
Alyssa, who is also a nurse, says she raised the subject of fertility preservation when Evelyn was diagnosed, and was pleased to learn about Lurie Children’s program. “We didn’t want Evelyn’s cancer to affect her for the rest of her life, and wanted to minimize the long-term effects as much as possible.”
 
Focusing on life after cancer
In the two-week period between her surgery to remove the tumor and the start of her chemo treatments, Evelyn underwent ovarian tissue cryopreservation as a participant in a research protocol. She is the youngest patient at Lurie Children’s to undergo the procedure, in which one of her ovaries was removed, frozen and stored for future use. Patients enrolled in the study will be followed over time to evaluate the effectiveness of cryopreservation.
 
Today, Evelyn is a healthy 5-year-old with a luminous smile. She completed her treatments last August, and has recently learned to ice skate and ski. Her close-knit family includes her maternal grandparents, Tim and Suzanne Brown. During Evelyn’s inpatient stays, Tim often accompanied Alyssa to Lurie Children’s. He was particularly struck by the stress families are under when their child is diagnosed with cancer, and the difficulties they face in making decisions on fertility issues.
 
“The natural inclination is for families to wallow in the horror of this diagnosis,” says Tim. “But preserving fertility is a way to focus on hope instead — hope for life after treatment for cancer.”
 
A grateful family gives back
In 2014, the Browns established the Evelyn Kelly Research Fund at Lurie Children’s to support Dr. Gosiengfiao’s research, which includes a study on premature ovarian failure in female patients who have been treated for pediatric sarcomas like Evelyn’s. Gifts are matched dollar for dollar by the Browns. So far $32,000 has been raised through individual gifts and fundraising events through Lurie Children’s Circle of Friends program. Recently, Kevin’s co-workers at Accenture Chicago Finance held their second annual “March Madness” event, with proceeds going to Evelyn’s fund.
 
“In our research, we want to determine which patients are most at risk for having infertility resulting from their treatments,” says Dr. Gosiengfiao. “We’d also like to have markers to determine more information about the timing of that risk. Some patients become infertile while in treatment, and some recover fertility for a period of time and then lose it permanently. We also need to address the timing of when to intervene, because we can’t always do so before treatment starts.”
 
Evelyn’s grandfather is optimistic that researchers will be successful in finding answers to questions like these. He says, “We have a lot of confidence in the work Dr. Gosiengfiao is doing, and we want her to know how important her efforts are to families like ours.”
 
This article originally appeared in the Spring 2015 issue of Heroes magazine.