Some moments are unforgettable – like the moment Dr. Jason Yustein met Katie*, a nine-year-old child with cancer.
Katie’s family had piled into their family car to drive more than five hours from West Virginia to Baltimore, Maryland with Katie’s MRI results in hand and a recommendation from their pediatrician to get a second opinion at Johns Hopkins Children’s Hospital.
“As a fellow, you’re the first one to get called into the ER,” says Yustein. When he met Katie, he noticed her lack of coordination and balance and heard her complain of headaches. On her MRI, he saw a large brain tumor. “A particular percentage was inoperable, and therefore, fatal. There would be no cure for the patient,” he recalls.
This happened during his first fellowship year at Johns Hopkins, so he called his supervisor and they went over the case together. “The only options we had were chemotherapy and radiation therapy – these would only provide extended period of life, but no cure.” Yustein explains. “I realized then what we can or can’t do. It put things into perspective. This was reality.”
The reality was that she had less than 5% chance of surviving. According to Dr. Yustein, patients with her condition were expected to die within 5 months. “But, the family was amazing,” Yustein remembers. “They were hopeful and wanted to try investigational therapies. They didn’t want to give up.”
Yustein didn’t want to give up either.
Katie had a course of investigational therapy and radiation. For a while, her condition improved and she lived much longer than expected. “During the 15 months she was alive after being diagnosed, she experienced life to the fullest. She explored places she had never gone before, met beauty queens, rode roller coasters (some I would not step foot into), and truly embraced life,” says Yustein.
There was certainly more to Katie than cancer. Yustein remembers her personality clearly. “She was a precocious and satirical child. She approached each day with a spark, as well as with some sassy attitude way beyond her 9 years of age,” recalls Yustein. “Not one visit into the clinic did she ask ‘why me?’ She took life on.”
“When she passed away, I attended her funeral and saw that her life not only touched a family, but a community. This same community had come together over the past year to organize everything from bake sales to carnivals to raise money to help support the patient and her family. It was a sad day for all, but also a happy time to remember how this young girl touched so many lives and how a family and community had joined together in love and support. It is remarkable, and reminds me that my responsibilities as a pediatric oncologist are to everyone involved in this person’s life, not only the patient,” shares Yustein.
Dr. Yustein is a St. Baldrick’s Scholar and a pediatric oncologist at Baylor College of Medicine, Texas Children’s Hospital in Houston, TX. His research focuses on certain types of tumors that form in the bones, specifically tumors called osteosarcoma and Ewing sarcoma. The most common bone tumors, they frequently afflict adolescents and young adults.
“Unfortunately, the survival outcome for these types of childhood cancers is significantly less than most other pediatric malignancies,” Yustein states. “Besides the poorer survival outcomes, these patients also have to deal with tremendous side effects due to the high dose chemotherapy regimens and the debilitating surgeries.”
Yustein is working to understand how these tumors live and grow to create better ways to eradicate them, allowing patients to live long and healthy lives. “Experiences with children like Katie motivate me to successfully accomplish both my clinical and research endeavors and remind me how fortunate I am to have chosen this career,” states Yustein. “With the crucial support of the St. Baldrick’s Foundation, especially in this difficult funding environment, I am able to continue my work in pediatric cancer research to help find cures and better treatments for kids with cancer.”
*The names in the story have been changed in respect for the family.
Watch as Dr. Yustein shares about the importance of childhood cancer research and the impact of St. Baldrick’s funds:
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