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PATIENT STORIES

A Family’s Choice Advances Cancer Care

 
Onstead family

Brody (pictured at far right) and his family faced an important decision about enrolling him in a St. Jude clinical trial to help prevent leukemia relapse. PHOTO CREDIT: Lauren Tyler Phtography

 
 

Brody had always been a healthy, happy boy who loved playing football and soccer. During a spring break trip to Florida, the 7-year-old seemed more tired than usual.  

After returning home to Arkansas, Brody developed a headache and began crying. An urgent care clinic treated him for an infection and sent him home.  

The next day, he had a high fever. His pediatrician diagnosed strep throat. But Brody did not improve. Trusting her intuition, his mom, Casey, took him to the emergency room.  

At the hospital, doctors found that Brody’s blood counts were dangerously low. This condition is called pancytopenia. They were concerned he might have cancer.  

He was eventually referred to St. Jude Children’s Research Hospital, where he was diagnosed with B-cell acute lymphoblastic leukemia (B-ALL). His type of leukemia carries a higher risk of returning after treatment.  

What had begun as mild fatigue during a family vacation now led Brody’s parents to face a life‑altering decision—one that would shape his care and could help other children in the future. 

Brody and therapy dog

As a patient at the St. Jude Leukemia and Lymphoma clinic, Brody has access to clinical trials, an experienced team of care providers, and the support he needs for his clinical trial experience.

Deep expertise in cancer care 

Brody was eligible for a clinical trial, an experimental way to treat disease. The trial focuses on leukemia and lymphoma that has a high risk of coming back.

At St. Jude, families meet directly with doctors leading clinical trials. The families can learn about the trials, ask questions, and discuss concerns. The care team takes time to explain the study and the treatment options. 

As a specialized care center for children with serious illness, St. Jude has deep expertise caring for patients enrolled in clinical trials that test the latest treatments. 

St. Jude offers families the support of many types of health care providers experienced in treating cancer. St. Jude pharmacists understand the clinical trial medicines that are used. Patients get onsite testing to monitor treatment. Social workers and clinical trial navigators are also available as part of a multidisciplinary team to families during cancer treatment. 

Brody and his mom

St. Jude is not just treating with the standard of care, like some other hospitals do. They are pushing boundaries to increase cure rates and remission rates. This is their foundation.”

– Casey

Weighing options 

Casey realized the seriousness of the situation and was understandably terrified. At age 18, she had lost her mom to colon cancer. She knew Brody needed the best possible treatment,  and she needed more information. She and her husband, Cody, discussed Brody’s treatment with oncologist Seth Karol, MD, and other members of the care team.  

Karol laid out the options. Brody could get the standard treatment for his cancer, or he was eligible to enroll in the SJALL23H clinical trial.

This trial adds 2 medicines to the first month of treatment. These medicines were already FDA-approved for use later in leukemia treatment. Inotuzumab attaches a lower dose of chemotherapy to an antibody to more selectively target cancer cells, enabling less chemotherapy to be given. Blinatumomab acts as immunotherapy by using the immune system to attack cancer cells and lower the risk of relapse. 

As a mother, Casey wanted the best care for Brody. As a pharmaceutical representative, she knew that clinical trials can provide new treatments for patients. 

“If we didn’t have clinical trials, we would not have the current standard of care for leukemia and other diseases,” Casey says. “The advances that are happening today in medicine are because of clinical trials.” 

Brody would be the fifth patient enrolled in the trial if they chose to take part.  

Building trust with the care team 

When Brody’s parents met with Karol they began to feel more at ease.  

“His bedside manner was wonderful, and he’s such a brilliant man,” Casey says. “I need someone who can explain to me what’s happening, but also who has a compassionate side.” 

Casey did her homework. She found information about other clinical trials in which Karol was involved in improving care for cancer patients.  

She and Cody knew that Karol had their son’s best interests at heart and was trying to provide the best treatment for him. 

Asking questions, sharing concerns 

Casey and Cody learned more about the medicines in the clinical trial. They wrote down their questions and asked them.  

She tells parents, “Remember that you are your child’s advocate. If you don’t understand or if something scares you, tell your doctors. They are not mind readers. Ask them to explain it in an easy-to-understand way. Do your homework; prepare yourself. Ask about the side effects of treatments. Ask if the benefits outweigh the side effects. Know what to expect, and how your providers plan to navigate them if they happen.”  

Asking questions and sharing concerns can provide the information needed to move forward. 

Brody in front of "Just Keep Swimming" sign

The sign on Brody’s door says it all: “Just keep swimming.” Casey says, “This is something we say as a family to remind us that, even when we feel hopeless, tired, or scared, we just keep going.”

A decision made 

The family relied on their faith and spent time in prayer, asking God to show them the right path.  

I felt in our hearts, along with what we learned from our research, that God was showing us that this was the right place,” Casey says. “This is the right doctor. This is the right trial for Brody.”  

When Karol came to see Brody during his first chemotherapy infusion, the family felt supported. 

“It made us feel so great, because we felt like he cared,” Casey says.  

The family was trying to decide whether to proceed with the clinical trial and other medicines. Casey asked Karol what he might choose if Brody were his child.

Karol told her he would choose the new trial with new immunotherapies. He said he would not have created the trial unless he believed it was the best option for children with this high-risk cancer.  

“For any parent going through this, ask yourself if your child is treated like a real human being,” Casey says. “Life is valuable and precious. If that answer is yes, then I think that’s an important answer about whether to enroll in a clinical trial.” 

Casey says she sees a larger purpose in their experience.

“I believe that God puts people in certain situations for a reason,” Casey says. “If Brody has to go through this, then I pray that he can help set the new standard of care that can help cure other kids.”  

 
 

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