February 10, 2017 - At 8 years old and with leukemia, Jhayliegh Rosales is years away from thinking about having her first baby.
When the ebullient second-grader checked into Children’s Mercy Hospital recently in preparation for a bone marrow transplant, she’d placed a pink cap over where her brown hair used to be. In brave declaration of her future, she wore a T-shirt printed with “WATCH ME WIN” as she rolled through the hospital’s halls, balancing inside a new pair of silver high-top sneakers embedded with wheels like roller skates.
“She just got those,” said her father Daniel Rosales, 28, a milk delivery truck driver from Ulysses. “They ought to keep her busy.”
Rosales and Jhayliegh’s mother Alyssa Lopez, 27, of Garden City, Kan., had to do some significant balancing of their own regarding Jhayliegh’s future — as a mother.
In late December, Jhayliegh became the youngest person in the Kansas City area to undergo a procedure, still considered experimental, in which ovarian tissue was surgically removed and frozen in the event that 15 or more years from now she may want to have biological children of her own.
The Kansas City Star (http://bit.ly/2laWequ ) reports the procedure has become common in adults, but it is not in prepubescent children, having expanded only within the last five years. Of the 30 research hospitals in the United States approved to do ovarian tissue cryopreservation (“cryo” meaning freezing), only 15 are approved for patients under age 18.
The University of Kansas Health System became one of those sites in May, when it was selected to become part of the Oncofertility Consortium. Run out of Northwestern University, where it began in 2007, the consortium is a global network of hospitals, researchers and physicians dedicated to preserving fertility in women, men, girls and boys in whom disease or treatments — particularly the chemotherapy used to battle cancer — might otherwise leave them sterile.
Consortium Director Teresa K. Woodruff said some programs are taking tissue from the testicles of prepubescent boys battling cancer. Others are freezing ovarian tissue from cancer patients as young as 1 or 2 months old.
“The reason that fertility has come up as such an important issue is that many people are surviving their cancers,” Woodruff said. “We talk about losing hair follicles, but we never talk about losing ovarian follicles.”
The promise of ovarian tissue freezing became evident in December with the birth, in England, of what was reported to be the first baby born from ovarian tissue removed from a patient when she was 9, before she had entered puberty. It was frozen and re-implanted 13 years later.
The mother, 24-year-old Moaza Al Matrooshi from Dubai, gave birth to a healthy son named Rashid. As a child, Al Matrooshi had been diagnosed with an inherited blood disorder called beta thalassemia that reduced her ability to carry oxygen in her blood. At 9, she received a bone marrow transplant from her brother. The chemotherapy needed for the treatment led to her infertility.
Lopez, Jhayliegh’s mother, said she first heard of the possibility of cryopreserving her daughter’s ovarian tissue from her oncologist at Children’s Mercy, Dr. Joy Fulbright. KU Health System and Children’s Mercy were working in cooperation.
Lopez said knowing that her ill daughter might one day have the ability to have her own biological children infused a long and difficult journey with a current of hope.
“You don’t typically think of your 8-year-old having kids because it is so far off in the future,” said Lopez, who with her husband Pablo Lopez raises both Jhayliegh and their 4-year-old daughter, Aziyah. “But when you’re going through this, you have to think of the future.
“I know if she wants to have kids of her own, this will give her an option.”
“Every bit of hope. That’s what we want for her,” Rosales said.
Jhayliegh was 5 years old when she was diagnosed in October 2013 with acute lymphoblastic leukemia, a type of blood cancer.
“She had always been healthy,” her mother said. “One night, she was just telling me her right side was hurting. It was kind of on and off throughout the day. But then around 7 p.m. I took her to the emergency room.”
Lopez, who had been employed in a lab drawing blood, had thought her daughter might have appendicitis. A fever was spiking near 104 degree. Soon after her lab tests came back, the doctor said Jhayliegh needed more blood work and immediately put her in an ambulance to see a specialist at a hospital in Wichita, more than three hours away.
The doctor had mentioned the possibility of cancer.
“The whole way there I was praying it was a mistake,” Lopez said.
It wasn’t. Jhayliegh had acute lymphoblastic leukemia with a genetic anomaly that would complicate her treatments. For the next two years and eight months, she endured rounds of chemotherapy that sapped her energy and took her hair.
“It was in June that she was supposed to have gotten her last treatment,” Lopez said, referring to last year.
Attuned to her daughter’s body and the signs of leukemia, Lopez soon began to notice some telltale bruising.
“She relapsed in November,” Lopez said.
Soon after, the physicians at Children’s Mercy told the family that Jhayliegh would need a bone marrow transplant. But this time, the more intensive chemotherapy and radiation would likely destroy the egg-producing follicles in her ovaries and her ability to one day become pregnant.
Children’s Mercy obstetrician and gynecologist Julie Strickland surgically removed the ovarian tissue in late December. Because the procedure is still considered experimental, insurance does not cover its cost, estimated at about $3,000, plus monthly storage fees for freezing. Jhayliegh’s bone marrow transplant is scheduled for this week.
“While immediately, in a child, surviving their disease is the most important priority,” Strickland said, “many families experience great angst about the possibility that, if their child survives, that they would not be able to go on and have children of their own.
“So the reason we’re doing this now is that we do have hope that children will survive their cancers . and we know from our survivors that this (fertility) is a very important aspect as they become adults.”
Jhayliegh’s ovarian tissue now sits safely in a tissue bank in Minnesota, frozen at minus 196 degrees Fahrenheit. At KU Health System, reproductive endocrinologist Dr. Courtney Marsh said the ovarian tissue can remain safely frozen for decades.
“There is no time limit,” she said.
As Jhayliegh ages, she will be required to take hormone injections to go through puberty. When a patient is old enough to want to get pregnant, the idea for many would be to re-implant the ovarian tissue. Woodruff of the Oncofertility Consortium said that in Jhayliegh’s case, that likely would not happen; with a blood cancer such as leukemia, it is possible that the ovarian tissue might contain active cancer cells even after decades of remaining frozen.
Re-implanting the ovarian tissue, she said, would risk reintroducing her cancer.
Jhayliegh, Woodruff said, will need to count on advances in medical technology. Instead of re-implanting the ovarian tissue itself, researchers are now investigating ways to stimulate the tissue with hormones to produce viable eggs in a test tube or petri dish.
Physicians might then implant any number of the patient’s own eggs. Or, using in vitro fertilization, they might combine those eggs with sperm to create implantable embryos.
“That really is the future for this 8-year-old,” Woodruff said. “The good news is we know we’re storing tissue in a way we know can give rise to live, healthy offspring. She has 20 years for basic science to become medical reality.”
“The beautiful thing is that this was her only chance. … She had a lot of intense cancer treatment coming up,” Marsh said. “She will likely have no ovarian function at all. We’re thinking of this as a medical treatment, giving her a quality of life.”
That’s what Jhayliegh’s mom and dad are hoping for.
“When you’re going through something like this, you have to have faith,” Lopez said. “I do believe everything is going to end well. It is good to hear about them talking about her future.”