September is Childhood Cancer Awareness Month, when many organizations work to build awareness of pediatric cancers and raise money for treatment and research. According to St. Jude Children’s Research Hospital, 43 children in the US are diagnosed with cancer every day, and “childhood cancer remains the leading cause of death by disease for children under the age of 14.” But advancement in treatments have resulted in better outcomes, with 5- and 10-year survival rates now over 80%, according to the National Institutes of Health.
The Cascading Effects of Treating Cancer
Pediatric cancers are commonly treated with chemotherapy, radiation, surgery or a combination of these. Chemotherapy treatments, which can be administered intravenously or orally, consist of medicines that kill cancer cells or impede their reproduction. During radiation treatments, tumors are targeted directly with high powered X-ray beams. While these treatments are the most effective methods of fighting cancer, they damage healthy cells as well, and may cause various side effects, including hearing loss.
“Depending on the type of cancer and/or medications the child receives, hearing loss has always existed as a side effect,” says Michelle Kraskin, AuD, CCC-A, audiologist and assistant director of audiology and speech language pathology at Weill Cornell Medicine in New York, NY. “However, parents now have more access to resources, and doctors have more options. Obviously, they’re trying to fight cancer though, so they want to do whatever they can to obliterate the cancer for the child.”
In these scenarios, many families choose to work with a team of health experts, which may include an oncologist, a hematologist, their primary care pediatrician, and a psychologist, who work together to assess benefits and risks and take a patient-centered approach to each child’s care plan. Depending on the side effects involved, additional experts—such as audiologists and education specialists—may join the team to offer specialized treatment and support.
Specialized Support for Hearing Loss
The Clarke team has experience working with families whose child is experiencing hearing loss connected to cancer treatment, and they’re poised to support them with audiology care, speech therapy, occupational therapy and listening and spoken language (LSL) education—all under the umbrella of a whole-child approach that considers the totality of healthy child development.
“We have seen children with this etiology and have learned that each child’s needs and experiences are unique,” notes Meredith Berger, MSEd SBL/SDL, director of Clarke New York. “A few things to consider are the age when the hearing loss started, the age of cancer diagnosis, the ‘typical’ childhood experiences they had before diagnosis, the impact treatment has had on all areas of development, and the impact of treatment on their current health and school attendance. And while we’re eager to provide the right, customized programming from our teachers of the deaf, speech-language pathologists and occupational therapist, we also know that social-emotional support for these children is just as important. Many children receiving cancer treatment have limited experience with children outside of their family, either because of hospitalizations or isolation from others while immunocompromised. Their chronological age may be very different from their social age and skill set, and they will need adult facilitation to learn some of the social skills their classmates developed at earlier ages. They may also experience gaps in attendance that require more support upon their return—to acclimate to the school environment again. We’re here to welcome them into the Clarke family with open arms, paying close attention to their needs and developing enriching experiences in our educational and therapeutic spaces.”
Five-year-old Julie, a preschool graduate of Clarke New York, was diagnosed with stage four neuroblastoma at 11 months old, and her treatments have included chemotherapy, radiation and immunotherapy. Julie uses hearing aids to access sound, as her hearing has been impacted by both chemotherapy medication and a tumor in her right ear canal. In addition to being enrolled in the Preschool Program at Clarke, Julie received occupational and speech therapy.
“Everyone at Clarke has made an impact for our family,” says Yaniv, Julie’s father. “Each and every one of them. Carla [Batista, teacher of the deaf] has been especially helpful. She also helped us mirror the school environment at home.”
The Clarke team coaches families to help them establish language-rich learning environments at home, as early as possible. To support Julie’s family away from school, her speech-language pathologist provided them with video footage of her demonstrating different LSL techniques they could use on their own. The video format allowed them to refer to the content whenever convenient. And Shantel Isaac, MS, OTR/L, Clarke occupational therapist, regularly sent the family videos of Julie’s progress, which Yaniv said was very encouraging. (To learn more about Clarke’s caregiver-coaching model, read “For the Best Outcomes, Educate Families First.”
While at Clarke, Yaniv and Julie’s mom, Jenny, noticed that Julie benefited from down-time with her tablet in the evenings—a fun form of escapism, as Yaniv put it. But he wondered if there were ways to incorporate interactive learning opportunities during these times. They met with their speech-language pathologist to figure out what types of content might be helpful to Julie, and discussed some apps she could use. [For interested families, Yaniv recommends an app called Homer.]
Staying attuned to a child’s moods, behaviors and needs—the way Julie’s family does—is essential to ensuring that their communication needs are being met. And when they’re able to express themselves, listen closely.
Trust Your Child; Trust Yourself
“Always listen to your child and the descriptions they use,” Michelle urges.
She shares a story about a child she met at age four, who had been diagnosed with stage four neuroblastoma and was losing her hearing from the treatments. The child didn’t have the language to explain that she was losing hearing ability, but she repeatedly talked about “the crickets” after each treatment.
“After [a treatment], she would say, I hear the crickets again, the crickets are really loud,” recalls Michelle. “And without fail, every time… it would turn out that we would test her hearing and her hearing was dropping. And the only thing I could equate it to would be if an adult has tinnitus and they report the ringing in their ears or the buzzing sounds, but she was little and she couldn’t tell us that it was ringing or buzzing.”
Michelle encourages families to trust themselves; they know their child best. “Let’s say [a child is] wearing hearing aids—and they’ve been wearing them consistently and they’re great users—and all of a sudden, they’re refusing to wear them. You have to stop to think… Is it that the hearing has declined, and those hearing aids really are just making noise in their ears? I think a lot of families are quick to assume that they’re just being finicky, when in actuality, there might have been a drop in hearing, and now those hearing aids are truly bothering them because there’s just noise in their ears.”
Managing Expectations After a Hearing Loss Diagnosis
Families often ask Michelle, how quickly will my child’s hearing loss progress?
“I’m very honest,” she says. “There’s no set trajectory. But that’s why we monitor closely. That’s why I have families looking for [pre-determined] cues from their child. We’re not going to be blindsided if—in six months from now—hearing has declined. We’re always prepared.”
Families also want to know what to expect for their child’s future. If the cancer treatment is successful, what will life be like with a hearing loss? With the appropriate supports, will they attain similar milestones as their peers?
“Absolutely,” says Michelle.
Considering his own hopes for Julie, Yaniv says, “We hope she leads a happy and fulfilling life. Full of joy and playfulness.”
He’d also like if she maintains her tenacity. “I’d like her to keep her motivation and confidence,” he says. “She has an ability to not care what others think. She’s not afraid of making mistakes, and she doesn’t get frustrated easily. We hope she keeps that.”
These qualities will come in handy when Julie becomes a firefighter, her posted career of choice at Clarke’s Moving Up and Moving On ceremony in 2023.