Published Feb 1, 2021

Childhood Cancer & Future Fertility: What One Mother Wishes She’d Known Before She Took Her 15-Year-Old Son to a Sperm Bank

Infertility can be a long-term side effect of childhood cancer treatment. A mom shares how parents can deal with this long-term risk along with the immediate threat of cancer.

Sonya Collins

Details

Childhood Cancer and Future Fertility

Not all cancer treatments lead to infertility.
There are options for preserving fertility.
Fertility preservation is a precaution, but not a guarantee of a future family.

When you learn your child has cancer, "Your heart stops and your mind spins," Jodi Harouche tells SurvivorNet. Her son Jordan was diagnosed with an aggressive form of brain cancer two years ago when he was 15. Before he could start his six rounds of chemotherapy followed by six weeks of radiation, there was a whirlwind of doctors' appointments a spinal tap, a brain biopsy, and placement of a port for chemotherapy and an urgency to start treatment right away. Still, the doctors assured Harouche that her son (now 17 years old, and six months in remission) would be fine and would go on to live a full life.

But one potential long-term side effect of chemotherapy could have a big impact on that full life that lay ahead.

"We knew that his treatment could potentially cause infertility, so in the middle of all these other appointments and a rush to start treatment, we also had to take Jordan to a sperm bank to secure his possibility of his having children in the future," she says.

Related: His Brain Cancer Appeared in 4th Grade, But This Teenage Survivor Has Big Plans for the Future

You can find almost too much information about brain cancer online. Harouche and her husband also found plenty of information about the relative risk of infertility after chemotherapy. But, when they looked for information to prepare them for the actual task of taking a teenage boy to a sperm bank, they found nothing.

Dr. Jaime Knopman explains how chemotherapy affects fertility

"It's really important to provide patients and their families all the information and education they need beforehand," Kari Bjornard, MD, tells SurvivorNet. Bjornard specializes in fertility and sexual health and long-term effects of childhood cancer at St. Jude Children's Research Hospital in Memphis, TN. "We want them to have all their questions answered so they can make the best possible decision."

But, sometimes parents don't know in time what questions to ask. Harouche shares her son's story so that other parents may be able to help their sons have a better experience.

Not a Place for Children

Because they had to start treatment right away, Jordan had one day to bank a sperm sample. NYU, where Jordan was in treatment, didn't offer sperm-banking. They referred him to a clinic down the street.

When Harouche, her husband, and son arrived, they were struck by the lack of warmth. The receptionist didn't even look up when they approached the desk.

"It was such a stark contrast to every other experience we'd had through this journey," Harouche recalls.

The staffer who took Jordan upstairs to the banking room was equally cold. She handed him a cup, pointed him to his room, and told him he could use the VCR in the room. (Jordan was born in 2003. He doesn't know how to use a VCR.)

There wasn't any lubricant in the room. A sign in the hall said "Ask receptionist for lubricant," which meant this already embarrassed adolescent would have to go back downstairs, past his parents, to the chilly front desk.

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A post shared by JZips (@j_zips)

Jordan fired off several texts to his parents: There's no lubricant. There's no lock on the door. Am I supposed to fill this cup all the way up? What's the WIFI password? I don't know how to work a VCR.

Finally, he returned downstairs and placed the cup where he had been instructed. But, a half-hour later, his parents received a call from the clinic. There was no sperm in the sample, only pre-ejaculation. They'd have to go back. So they turned around. Their second visit to the clinic was even less successful. Jordan, now frustrated, embarrassed and tired, just couldn't do it.

On their way out, a doctor told them they could take a cup and try at home. He said it would be fine as long as they could get the sample back to the clinic in under an hour.

"Why didn't someone tells us that before?" Harouche wondered. She knew her son would have been more comfortable anywhere else. But now it was too late for that. Jordan's treatment would start the next day. They left the clinic for the last time.

Advice for Parents of Adolescent Boys

"If you read or hear that infertility is a possible side effect of your child's cancer treatment, you should feel fully empowered to ask 'What is that risk?'" Bjornard says. "Not all cancer treatments have the same impact on fertility. Some may list it as a very rare side effect and some may list it as a more common side effect."

Whether or not your child's cancer care facility has fertility specialists or options for fertility preservation in-house, "Oncology providers should feel equipped to respond to questions about risk and share in decision-making about fertility preservation and whether it can be done before starting therapy," Bjornard adds.

Harouche, based on her family's experience, offers this specific advice for any parents who find themselves in this situation.

Tips for Parents

Find out if your son can produce a sample at home or at the familiar pediatric facility where he is used to getting his care.
Schedule as soon as possible so your son doesn't feel pressured by timing.
If your only option is to bank at an unfamiliar clinic, visit beforehand so it's not such a strange place.
Call ahead to let front desk staff know that you are bringing a teenager in. Make sure he'll be made to feel welcome and comfortable.
Get the WIFI password in advance.
Bring your own lubricant.
Make sure your son knows in advance the difference between pre-ejaculation and sperm and how much sperm is needed.
Consider whether your son might feel more comfortable going to the clinic with an older sibling or someone other than a parent.

"You've got to set them up for success so they can do what they have to do more comfortably and without being disappointed," Harouche says. "You never want your kids to be disappointed about anything."

Options for Boys & Girls of All Ages

Options for preserving a child's fertility before cancer treatment vary by age and sex. These are the main strategies:

For boys after puberty Sperm banking
For girls after puberty Harvesting and freezing eggs, which can take 10 to 15 days
For boys before puberty Freezing of testicular tissue, an experimental technique with limited evidence for its efficacy
For girls before puberty Freezing of ovarian tissue, also an experimental technique with limited evidence for its efficacy

It's important to keep in mind that these options are precautions. Many children who've had cancer and chemotherapy grow up to have children naturally. Also, keep in mind that fertility preservation is not a guarantee.

"When we have a patient sitting in front of us," Bjornard says, "none of us can say whether they will or will not have trouble conceiving in the future. Even if you do fertility preservation, there's no guarantee that your stored biologic material will result in a child one day."

Plan B for Jordan

As for Jordan, he has a plan B. He is currently on testosterone shots which he gives himself every other week. He'll do this for three years, in the hope of increasing his sperm count, and then try to bank sperm again.

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A post shared by Jordan Harouche (@j_zips)

He's finished with his cancer treatment, which gives him time to help other kids with cancer. Jordan founded a non-profit called JZIPS. The organization collects donations of new t-shirts cool ones that kids will like and inserts zippers to allow for easy access to their port for chemotherapy. That way they don't have to undress and wear gowns for each infusion.

The organization donated more than 1,000 zippered t-shirts last year. You can find out more here.

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