Fertility Preservation at Phoenix Children’s Makes Future Motherhood Possible for 10-year-Old Cancer Survivor
“She tells everyone she wants to be a mom when she grows up. She’s just so nurturing, and it would be awful to think she couldn’t do that.”
It’s what Jennifer Tully of New River says about her 10-year-old daughter, Carmella. She’d always played with dolls, and for most young girls her age, future motherhood seems like a given.
But for Carmella, her journey through cancer posed a risk to her future plans.
At just 9 years old, Carmella’s attentive pediatrician was concerned about what he thought was some pressure he felt during a well-check exam. An MRI and CT scan later, she Carmella was routed to Phoenix Children’s Hospital for where they found a mass on one of her ovaries. Ovarian cancer is rare in children, occurring in 1-2 out of 100,000 girls.
“I was in shock. She was always healthy and active, climbing rocks and playing outside. There was nothing to indicate anything was wrong,” Jennifer reports.
She had no way of knowing then that while she and her daughter would fight cancer, Carmella would also make history at Phoenix Children’s. And even play a small role in touching the future for other kids with cancer.
Surviving Cancer Today, Planning for a Family Tomorrow
Carmella underwent surgery to remove the sizeable mass on her ovary at Phoenix Children’s in August 2018. Today, approximately 1 in 285 children will be diagnosed with cancer before their 20th Birthday. At the Center for Cancer and Blood Disorders at Phoenix Children’s, more than 300 newly diagnosed children are treated each year.
Today, medical advancements have delivered much progress, and 85% of pediatric cancer patients survive. While more children are conquering cancer, once the battles have been won, some will experience a lingering impact into adulthood, including the risk for infertility.
Alexandra Walsh, MD, Director of the Survivor and the Fertility Preservation Programs at the Center for Cancer and Blood Disorders at Phoenix Children’s, says the majority of children will have at least one side effect attributable to their treatments. Those who undergo radiation to the abdomen, high doses of particular chemotherapy agents (known as alkylators), or undergo a bone marrow transplant are at particularly high risk for developing infertility. Even though some risk factors are known, doctors can’t always predict which patients will suffer infertility. So ideally, steps should be taken before treatment begins.
At Phoenix Children’s, fertility preservation services had been available for boys that have been through puberty for many years. But the procedure is much more involved and costly for girls, and is not covered by insurance. The Phoenix Children’s Hospital Foundation launched a fund, sponsored by Titan Solar Power, to cover the costs for a pilot program for five girls to undergo the procedure.
“I have always cherished our relationship with Phoenix Children’s. It’s hard not to say yes to every need they have. However, when they brought the Female Fertility Preservation project to my attention, it was a must. I’ve seen firsthand what it looks like to see someone you love be told they won’t be able to conceive because of cancer. It’s devastating news and if we can help even one child not ever have to hear that it will be worth it,” says Heather Williamson, Chief Operation Officer of Titan Solar Power.
Fortunately, since girls are born with all the eggs in their ovaries they’ll ever have, they don’t have to wait until the onset of puberty. So Carmella paved the way, becoming the first patient at Phoenix Children’s to undergo Ovarian Tissue Cryopreservation (OTC).
The procedure involves the extraction of ovarian tissue for freezing and storage until a patient like Carmella is ready to start planning for a family. For her, after another mass was found a few months later and she had to have a second surgery, Kathy van Leeuwen, MD performed the procedures simultaneously before Carmella’s chemotherapy regimen began.
“We had to see if the cancer had spread to her remaining ovary, and it hadn’t. She has an ovary and a uterus. The eggs we are saving will be in case the medications were toxic to her remaining ovary,” says Dr. van Leeuwen. “Carmella was so calm and mature,” she says.
Hope for the Future
“Carmella was so young, I never even thought of how cancer would affect her fertility,” said Jennifer. “Dr. Walsh came to me and explained that while the procedure was still a new one, Carmella was an ideal candidate. And, that the tissue would also be used to conduct research. I really liked that idea, that she could help others.” Dr. Walsh says she includes her patients on those conversations, too. “I think kids are smart, and understand much more than we give them credit for,” she says.
For Jennifer, a single parent, the procedure was one more in the many ways she felt supported by the team. “I tell everyone I can that Phoenix Children’s just an incredible place. They took excellent care of my daughter, and she was never scared to go to the Hospital. When she was inpatient, she had visits from dogs, music therapy – and even got to meet Jason Mraz, Miss America, and some Cardinals players. They ask about your financial and emotional needs, and this was just one more way they looked out for us,” she says.
Today, Carmella’s scans show no signs of cancer. The experience changed her mom, too. “You just don’t realize how fragile life is. So I’m a little more careful when it comes to aches and pains; and I try to just be happy every day.”
Many who work in cancer care at Phoenix Children’s say the Fertility Preservation project helps parents with something else, too. One mom put it this way: “It’s a way for us to talk about the future, which means that it’s a possibility. And that gives us hope.”
Carmella got the chance to share her extraordinary story on Channel 3. Check it out here!