Brave Preschooler Battles Rare Childhood Cancer and Wins

On any given Sunday, you can find Marlee, age 4, and her family going round and round the lazy river at the waterpark near their home in Santa Maria, California. The family has been making up for lost time by soaking in summer days.   

“This summer, we enjoyed all of the things we couldn’t do for the past year,” says Joe, Marlee’s dad. “We realized that happiness is a part of healing. The Stanford team showed us that.”

Marlee had a rare form of childhood cancer called rhabdomyosarcoma (RMS), a soft tissue cancer named after the type of cells that it starts in—rhabdomyoblasts. Only about 350 children each year in the United States develop RMS. Because it’s so rare, it can be hard to catch early. Marlee’s cancer presented itself with fatigue, headaches, and eventually a worrisome mass in her thigh.

“Marlee was referred to us by a surgeon near her home when she was 2 years old. Given the concern that the mass in her thigh was cancer, she was seen by both myself and our orthopedic surgical oncologist, Dr. Robert Steffner, who did a biopsy. This confirmed the diagnosis of RMS,” says Jacquelyn Crane, MD, a pediatric oncologist at Stanford Medicine Children’s Health who treated Marlee.

Pediatric oncology experts with the Bone & Soft Tissue Tumors Program then took a bone marrow sample and performed imaging tests to see if the cancer had spread beyond her thigh. Unfortunately, it had. Marlee’s cancer was stage 4, the most advanced that it gets.

“With such a difficult, rare type of cancer, it’s vital to receive care from a specialized sarcoma team—something that our large pediatric cancer center here at Stanford is fortunate to offer,” Dr. Crane says.

The best care to beat childhood cancer

Marlee was cared for by a large team of specialists, including a pediatric oncologist, an orthopedic surgeon, and a radiation oncologist who are all experts in bone and soft tissue cancers, along with their specialized team of nurses and therapists. They all worked together to tailor care to Marlee’s needs. Beating pediatric cancer demands the right treatment at the exact right time.  

“Her cancer had spread to her lymph nodes, bones, and bone marrow. So, we started her on chemotherapy,” Dr. Crane says. “We saw significant shrinkage of her tumor within a few months, but she still needed additional chemotherapy as well as radiation.”

Akilah Burford, a social worker dedicated to cancer patients, worked closely with the family to care for their every need. She clearly remembers the moment when the whole team and the family learned that the tumor in Marlee’s thigh was gone.

“That was a special moment for all of us and a huge win for the family. She was all set to have surgery to remove the tumor, but there was no tumor,” says Burford.

While that was great news, radiation to the thigh was still needed, and the cancer had to be eliminated throughout the rest of her body, requiring over a year of treatments with further chemotherapy and radiation. Early on, due to COVID-19, only one parent could be with Marlee at a time. For Renee, Marlee’s mom, it was extremely overwhelming to be the only one shouldering Marlee’s care during her hospital stay. Burford worked her magic and advocated that both parents be present. That helped immensely because Renee could be there emotionally for Marlee while Joe could take notes during talks with the doctors.

“We were a team. We rode the lows and highs together. It’s a terrible disease and a terrible fight. But we are both fighters and so is Marlee,” Renee says.

The couple recalls a time during chemo treatments when Marlee was very sick. She was losing weight fast, and they were afraid that they would lose her.

“At that point, we asked the doctors how long she had to live, and if we should take her home and simply enjoy the rest of her life,” Joe says.

Marlee was close to needing a feeding tube, but a nutritionist on the cancer team helped her start eating again. Marlee’s parents advocated for her to receive homeopathic appetite stimulants. The medical team agreed, which they really appreciated.

“The doctors at Stanford Children’s Health are brilliant and top of the line. They are the best at dealing with childhood cancer. We advocated for Marlee and they trusted us. And we trusted them,” Renee says.

Dr. Crane is one of Marlee’s favorite people. Besides loving Disney princesses, Marlee loves Barbies. She has one that’s a doctor who gives shots, checks the heart, and takes weight and height measurements. She named her Dr. Crane.

“Marlee is such a warm, energetic child. Her parents have a lot of resilience and strength, and I appreciated partnering with them all along the way,” Dr. Crane says. “It was a long, difficult journey. I’m proud of how our whole team came together to support their well-being.”

Chemotherapy and radiation: The one-two punch for cancer cells

Marlee had chemotherapy for five months, then radiation on her thigh, then chemotherapy again, followed by additional radiation. Chemotherapy and radiation work in tandem to attack and kill cancer cells.

“Marlee had an outstanding response to chemotherapy, so our goal with radiation was to maximize that response and wipe out any residual cancer cells,” says Susan Hiniker, MD, a radiation oncologist at Stanford Medicine Children’s Health. “When treating cancer in kids, we think about what we can do to minimize the risk of side effects while not sacrificing a cure.”

Chemotherapy damages the genes in cancer cells, while radiation breaks down their DNA. Marlee had her last radiation session in June 2022—hence the summer of celebration.  

“There are several life stages of cancer cells. With radiation we time it so that we hit the cells at just the right point in their life cycle,” says Karim Aref, a radiation therapist who cared for Marlee, calling her one of his favorite “little nuggets.”

The radiation oncology team does their best to make treatments fun for kids. Marlee loved driving the team’s miniature Mercedes through the hallways before and after treatment, and Aref would make her Sonic the Hedgehog hands out of surgical gloves. Kids can wear cool Avatar-like masks during treatments and special wigs when they lose their own hair. Marlee picked a wig of a Disney princess, of course.

“How well Marlee tolerated cancer treatments is a credit to her parents. The fact that she even enjoyed the experience is really due to her parents, who made that possible for her,” Dr. Hiniker says.

Marlee is a thoughtful child, wise beyond her years. She reflects on her time at the hospital, recently telling her mom, “No more spaceship, Mommy.” It’s what she called the radiation machine that has an other-world look to it. She also has an access port through which she receives medications, and she dreads the poke of the needle to start the infusion. Interestingly, she hesitates to go through the final step to close the chapter on her cancer—giving up her port.

“Marlee used to ask me every five minutes, ‘Mom, doctor?’ She wanted to know every step. It seemed like anxiety, but thankfully she has finally stopped asking,” Renee says. “Today, she’s sleeping through the night, eating well, and starting to potty train.”

Despite all she has been through, Marlee calls the doctors and nurses at the hospital her “best friends.” She says she was “brave and strong,” just like one of her favorite Disney characters, the warrior princess Raya from Raya and the Last Dragon.

Well-rounded care for every need

Besides great medical care, the team helped the family manage other life worries and demands. Many parents who endure cancer treatments for their child are pulled away from work and home and need extra help. Burford, their social worker, is a treasure trove of endless support and resources. She tapped into several pediatric cancer foundations for special grants to help the family with rent, meals, gas, and food but also to secure fun items, like birthday cakes and the remodeling of Marlee’s bedroom.

“My advice to a father with a child who has cancer would be to swallow your pride. Accept help and the services that are offered,” Joe says. “At first I felt ashamed, but Akilah and the rest of the team taught me that receiving is just as important as giving.”

Burford arranged for the family to stay at the Ronald McDonald House at Stanford while Marlee was in the hospital, and she joined efforts with psychiatry and psychology, music therapy, art therapy, and Child Life and Creative Arts to make sure the entire family’s needs were met. The crowning moment of her efforts was helping Marlee get her wish with the Make-a-Wish Foundation—a Barbie playhouse in her backyard.

“Marlee’s my little princess. We thought we had lost her at one point, but she is back,” Joe concludes. “It took everyone to heal her. The community at Stanford and our own community. It was humbling to learn how many people were out there that wanted to help us. We are so grateful.”