When 4-year-old Sienna skips into MSK Kids wearing rainbows and a big smile, the whole space lights up.
“Despite facing this very serious disease and going through difficult treatment, Sienna is always so happy and upbeat,” says her doctor, pediatric hematologist-oncologist Michael Ortiz, MD.
“In the recreation center, she walks right up to the other kids and starts talking to them,” adds nurse practitioner Talia Sauerhaft, NP. “She lifts the spirits of everyone around her.”
Ask anyone at MSK Kids, the pediatric program within Memorial Sloan Kettering Cancer Center (MSK), and they’ll say they’re inspired every day by patients like Sienna in their drive to treat cancers in children.
“Our group tends to handle a lot of hard-to-treat cancers, where there often isn’t any standard guidance on what will or won’t work best,” Dr. Ortiz says. “We collaborate with scientists and doctors across the hospital and elsewhere to figure out how we can best help our patients.”
And in their search for the right treatment, making the entire family feel hopeful and cared for during an overwhelming experience is a priority for the whole MSK Kids team. “We spend a lot of time getting to know these kids and their families,” Dr. Ortiz says.
A Child Receives an ‘Unthinkable’ Diagnosis
Sienna’s parents, Chris and Tara, were devastated to get the news that would change the course of their lives.
“There are days in a parent’s life that don’t just alter the future, they fracture reality,” Chris wrote on his LinkedIn page. “For our family, that day arrived on Christmas Eve 2024, when we heard the unthinkable: Your daughter has cancer.”
It was Wilms’ tumor, a type of kidney cancer that is rare, diagnosed in only about 500 children in the United States every year. Reeling from their daughter’s sudden diagnosis, Tara and Chris managed to focus quickly and took her to MSK Kids, where they first met with Dr. Ortiz.
Dr. Ortiz, one of the leaders of the MSK Kids’ Rare Tumors Program, is a world-renowned expert in Wilms’ tumor and other pediatric kidney cancers. He has led several clinical trials investigating more effective, less toxic ways to treat Wilms’ tumors.
These therapies must strike a delicate balance: Treatments have to be strong enough to eliminate the cancer, while sparing patients from side effects as much as possible. This is especially important for childhood tumors like Wilms’, where the average age of patients at diagnosis is between 3 and 5 years old. The cure rates for Wilms’ tumor are high — up to 90% — but patients may face a lifetime of side effects from the treatment, including infertility and heart and kidney problems.
Undergoing Pediatric Wilms’ Tumor Treatment at MSK Kids
Days after her diagnosis, Sienna was admitted to MSK. Still in a state of shock, her family was grateful for how quickly MSK Kids pulled together a team to care for Sienna.
Pediatric surgeon Joshua Honeyman, MD, performed an eight-hour operation the next morning to remove her left kidney and adrenal gland and some of the surrounding lymph nodes. It was a big surgery for such a little girl, but all went well.
After recovering from surgery, Sienna quickly embarked on 33 weeks of chemotherapy under the guidance of Dr. Ortiz. At the same time, Sienna also underwent two rounds of radiation therapy, first to treat her abdominal tumor and then later to treat tumors that had spread to her lungs. This treatment was overseen by pediatric radiation oncologist Suzanne Wolden, MD. Dr. Wolden used intensity-modulated radiation therapy to protect her lungs and minimize radiation exposure to Sienna’s heart.
Frequent scans and other tests of the tumor help ensure that Sienna’s treatment at every step is just enough and not too much for her.
“We’re always trying to gauge how much therapy to give based on the biomarkers in the tumor and the response we see,” Dr. Ortiz says. “Every MSK Kids patient gets treatment that is personalized to them. This is particularly important for patients with Wilms’ tumor, where we do have many active treatments, but each comes with distinct risks and benefits.” Every Wilms’ tumor patient at MSK Kids has their own treatment plan.
Caring for the Whole Child — and the Entire Family
Chris and Tara are adjusting to a new normal in their Connecticut home, where they are also raising two other children — Georgia, 5, and Bennett, 1. To juggle it all, Tara took a leave of absence from her job, while Chris works mostly from home as a workforce consultant.
“A lot of people ask us how we’re coping, how we’re doing so well,” Tara says. “I tell them we’re just following Sienna’s lead, because she’s incredible. She is our guide.”
The Importance of Play at MSK Kids
Keeping spirits up is an essential part of care at MSK Kids. There is play therapy, guided meditation, music therapy, and dance and movement classes. For older pediatric patients, a teen lounge provides a space to hang out, play video games, and meet others facing the same challenges.
Reducing Anxiety
Child life specialists are available to help children and their families get through potentially frightening medical procedures and hospitalizations.
“One thing we really focus on is to decrease stress and anxiety for kids who are coming into the hospital,” says child life specialist Beth Kramsky, MS, who has worked with Sienna and her family. “We help explain their illness and what’s happening to their bodies in ways that are developmentally appropriate for each child.”
Using Special Toys
Child life specialists have different ways to support patients in the hospital. Books can help children gain a better understanding of their illness. Children can play with stuffed animals, such as a “chemo duck,” to learn about port access and other medical procedures.
“Every patient is different, so we try to create special stuffed animals, dolls, or action figures to match their own lines or ‘tubies,’” Kramsky says.
“We also allow children to safely play with the medical materials, to desensitize them to equipment and address fears they might have about the hospital,” she adds.
It’s all part of giving young patients a sense of control. In some cases, they can even participate in their own treatment.
Sienna’s Resilience and Her Family’s Strength
At Sienna’s chemotherapy appointments, her sassy, sunny disposition shines through. She delights in being able to help the nurses flush her port. After blood draws, she reminds her nurse to shake the tubes. And when asked whether she’s going to be a nurse when she grows up, Sienna replies, “Of course I am.”
The well-being of siblings matters too. Kramsky has met with Sienna’s sister, Georgia, a few times. “Being separated from her mom and sister has been especially hard,” Kramsky says. “It’s been really helpful for Georgia to be able to see where Sienna goes when she’s at the hospital.”
Chris and Tara say Dr. Ortiz and the entire MSK Kids team have given them strength and confidence. “Walking through that door on York Avenue, there is a moment where the weight on our shoulders is lifted,” Chris says. “There is just this level of safety and trust, where we know Sienna is in the right hands.”
“Dr. Ortiz explains everything super thoroughly, a thousand times if we need him to,” Tara adds. “He understands this is all new to us, that we don’t speak that language. He will spend hours with us answering our questions.”
Giving Back and the Motivation to Keep Going
Despite all the challenges they are facing with a young child in cancer treatment, Chris and Tara are still finding time to give back. Tara led a Cycle for Survival team that raised nearly $100,000 for MSK research on rare cancers — including pediatric cancers.
Chris frequently writes eloquent and widely shared posts on LinkedIn about his family’s experiences and his deep respect for Sienna’s care team. The family also started a GoFundMe page, with a commitment to donate any funds not needed for Sienna’s care to Dr. Ortiz’s research program.
For Dr. Ortiz, the ability to find successful treatments, while comforting children and their parents during their darkest moments, continues to drive him. “When our patients come back to see us years later,” he says, “and we see them thriving, happy, and growing up just as expected, nothing could be more inspiring to continue this mission.”