Kids preserve fertility while fighting cancer

CHICAGO – It seemed like the flu.

Three years ago, Tim Brown’s 3-year-old granddaughter Evelyn had an upset stomach and a fever.

Symptoms persisted, as did her mother’s nagging sense that something was wrong. A blood test led to an ultrasound, which revealed a tumor. She was diagnosed with rhabdomyosarcoma, a rare cancer.

“I want her ovaries saved,” her mother, a critical care nurse, told the doctor.

Children younger than ever are able to set aside hopes for the future, in the form of tiny ovarian and testicular tissues saved by Chicago hospitals.

“We really hope that they’re seeing it as a message of hope,” said Lurie Children’s Hospital pediatric nurse practitioner Barbara Lockart, who counsels families on the procedure. “Because it means that we’re looking to the future. And we believe that their child does have a future.”

Chicago is at the forefront of forming hope for children. At Lurie, children play with dolls as Lockart tells their parents about the fertility preservation program. Some boys and girls tell her they, too, want to be moms and dads.

Her job is part of a broader effort that puts Chicago at the center of research that’s exciting experts. At the head of the effort is Dr. Teresa Woodruff, a pioneer in the field of oncofertility, a term she coined to combine oncology and patients’ fertility options.

Last week, Woodruff co-authored an article in the journal JAMA Oncology emphasizing fertility options for ages “from birth upwards.” Woodruff also leads the Oncofertility Consortium, a Northwestern University-based national group to explore reproductive futures. Hospitals around the country send young patients’ tissue samples to Chicago for research.

Most children survive cancer – nearly 85 percent, according to St. Jude Children’s Research Hospital – and studies are emerging to better plan for their future. Chemotherapy and radiation can damage reproductive systems, even as they offer an aggressive rescue.

Last month, Lurie confirmed a pilot study to research, in part, how chemotherapy affects the egg reserve in pre-pubertal girls. In the oncology ward, where hippo paintings greet pint-sized patients, the number of children saving the option to have children is steadily increasing.

Six years ago, no girls saved eggs or tissue. Last year, 11 saved ovarian tissue and one opted for egg banking, according to Lockart. Boys preserving sperm grew from six in 2010 to 19 in 2015, with one saving testicular tissue.

One of those frozen tissues is from the left ovary of Katie Palermo, a high school junior.

Back at Lurie for a routine spinal tap, Palermo recounted her leukemia relapse. A doctor mentioned possible risk to her ovaries.

“I honestly didn’t think that much of it,” she said. “Being 15, I was like, ‘I’m not thinking about having kids right now.’”

But after talking with her mom, Joan Vander Linde – both share a dry humor and enjoyed waving to her ovary when they passed its storage facility downtown – she said yes.

Potential procedures available to families range from quick, painless and fairly routine – sperm banking, for example – to surgery to extract tissue as an experimental option. As possibilities have expanded, so has the complexity of these conversations.

Parents struggle to absorb the realization of their worst nightmare – that those flu-like symptoms are, in fact, cancer – much less think decades ahead.

“That’s our job, to make sure they think about it,” said Kristin Smith, a Northwestern patient navigator for patients of reproductive age.

Telling an adult about options to, say, remove her ovary can be weighty. But what happens when the patient is 3 months old, or even 13? Children must be at high risk for infertility. Still, the decision is not always easy, nor options always available.

A teenage girl might be too sick to take weeks to save eggs. A boy might not want to talk about sperm banking with his mother in the room. Families have declined because of religious reservations, Lockart said, or cost. (Storage can cost $75 to $400 a year, Smith said. For the procedures, egg banking can cost, without insurance, as much as $5,000, and ovarian tissue banking can be three times that, although often it is covered by insurance.) Parents wrestle with delaying a toddler’s lifesaving treatment.

“It gets a little tricky, because we’re talking about somebody’s future,” Smith said.

With teens she talks to, parents are included. But, she said, “We feel like it’s ultimately that child’s decision.”

Lockart tries to meet with parents and patients the day of diagnosis.

“That’s a pretty emotional time for families,” she said. “They just found out that their child has cancer, and then they have to make some pretty significant decisions.”

How much of that to translate to a child depends on age and development, she said. Parents might mention that a child loves to play house, or cuddles their baby doll.

“I’ve been surprised,” Lockart said. “Even young children can tell me that they know that they want to be a parent.”

And ethics must enter the conversation – should the child die before age 18, parents decide whether they want stored tissue, eggs or sperm donated to research or discarded.

“You want to make sure parents are clear on that, going in, that this is not a way to preserve your child,” Lockart said.

She added, “If the parents say to me, ‘I want to be a grandparent,’ then we’re probably going to have to stop that conversation and redirect it.”

Dr. Arthur Caplan, director of the Division of Medical Ethics at New York University’s Langone Medical Center, described the potential for ethical wrinkles.

Imagine, he said, a 14-year-old who stores eggs. A few years later, doctors tell her she has three years to live. Should nine months of those years be devoted to pregnancy? Doctor, parents and patient might disagree.

“The doctors may say it’s too dangerous,” he said. “She may say, ‘I don’t care, I want to have a child. I want to leave somebody behind.’ Those are the kinds of hard questions that can come up.”

And parents might disagree with a doctor about whether a child can digest risks and benefits.

“If a doctor thinks the patient can understand at age 10 or 12, their duty is to the patient,” he said. “So they have to try and involve them.”

Often, he said, ethical entanglements crop up less around initial storage than what happens years later.

“You don’t necessarily have to decide at 5 what you’re going to do at 25,” he said.

Standing over a child’s crib, listening to a doctor detail weeks of chemotherapy, the layers of information can overwhelm.

“A lot of times their main focus, appropriately, is on their child’s survival,” said Dr. Jennifer Mersereau, director of University of North Carolina’s Fertility Preservation Program. “(Parents think) if the fertility option works out that’s great, that’s icing on the cake.”

Brown hopes to help. In February 2015, he founded the Pediatric Oncofertility Research Foundation to help families sift through their options – or even be aware of them.

“Depending on where the child is being treated, it may not even be brought up,” Brown said.

Despite the American Society of Clinical Oncology suggesting that families be informed of fertility options, an October Cancer journal article surveying adolescents and young adults found that more than half – 56.3 percent – of females, and 29 percent of males, reported no such discussion before treatment started. The National Cancer Institute doesn’t track the prevalence of fertility preservation among adolescents; research, and data, is still emerging.

Brown’s group funds the new pilot program at Lurie and just funneled funding to a lab in Washington, D.C., studying fertility for pre-pubertal boys.

For Maria Pisano, the future-focused conversation about her 1-year-old daughter’s cancer snapped her into the present.

“I felt like I couldn’t discourage something like this from being a possibility for her because I was so distraught,” she said.

They saved one of Talia’s ovaries – the “size of the tip of your pinkie,” she remembers.

Options depend on type, treatment, time.

Boys past puberty can bank their sperm, just like adults. Similarly, post-puberty girls can have eggs harvested, as a woman would while undergoing fertility treatments. But it requires fertility drugs, and weeks.

“Some of our patients don’t have time,” Lockart said.

For children before puberty, this is the most experimental phase – but also where much research is focused.

Testicular or ovarian tissue can be removed and saved, with the hope that it can be reimplanted, or otherwise used, later. Doctors hope science around fertility will catch up with the children as adults. Last year a woman in Belgium was the first in the world to have a baby after transplanting tissue saved at 13.

“In pediatrics, we have the luxury of time with our younger patients, to have the science work out for them,” said Dr. Jill Ginsberg, a pediatric oncologist at the Children’s Hospital of Philadelphia, where doctors send half of every ovarian sample to Chicago.

Still, Ginsberg cautions, “When you present something to a family, it’s critical that they know we might never figure this out.”

For now, Palermo might be thinking more about prom than progeny, but she’s glad that her ovary is safely frozen, waiting.

Future families, Lockart cautions, might navigate a few complications. Palermo jokes about someday asking a partner, “Can I start defrosting it?”

Just the conversation is a gift in Lockart’s mind. She came to Lurie after working with adult cancer survivors in their 20s and 30s – many whose cancer left them infertile.

“It was devastating,” she said.

She hopes her young patients – those with bows on their bald heads or, like Evelyn, healthy kindergarten students who love ice skating and “Downton Abbey” – will keep in touch.

“I’m hoping to get some baby pictures,” she said.