Cayden is Surviving Two Bouts of Rare and Often Lethal Brain Cancer Thanks to Superior Care at Johns Hopkins All Children’s Hospital

Posted on Sep 06, 2016

At just one year old, Cayden was diagnosed with a tumor in his brain. “He just was sleeping a lot, very lethargic, he wasn’t eating, he wasn’t nursing, he wasn’t doing anything but sleeping,” recalls his mom, Chelsea.

Cayden and his family were referred to Johns Hopkins All Children’s Hospital and its pediatric neuro-oncology program. A CT scan revealed a tumor that was diagnosed as atypical teratoid rhabdoid tumor (ATRT)—a very rare and fast-growing tumor of the central nervous system with a survival rate for children under 3 of less than 15 percent. Cayden was rushed into surgery. “It was like a wrecking ball hit a building,” Chris, his dad, remembers.

Brain cancer is rare in small children, and it is also extremely rough on their tiny bodies. Cayden’s family knew he was in good hands.

“We have everyone we need here to give Cayden the best care possible – neurosurgery, neuroradiology, neuropathology, and neuro-oncology, plus all supportive care and other specialists we could  need,” says Stacie Stapleton, M.D., who directs the pediatric neuro-oncology program at the Johns Hopkins All Children’s Cancer & Blood Disorders Institute. Stapleton is one of only a few fellowship-trained pediatric neuro-oncologists in the state of Florida.

“The overall survival rate for brain tumor patients is 50 to 60 percent,” explains Stapleton. “Cayden’s tumor is high grade and highly malignant and has a much worse prognosis, therefore we treat the tumor aggressively with multiple treatments including brain surgery, radiation to the brain and heavy-duty chemotherapy, all of which can have major side effects.”

After a year of chemotherapy, Cayden’s tumor came back. At the time of his diagnosis, the treatment for ATRT was still new and admittedly extremely rough on a young child. Cayden, whose name derives from the Gaelic word for “warrior” was chosen because of his resilience. “He’s had numerous setbacks,” says Chelsea, “but one of the reasons why I think he was selected is because he always seemed to persevere. He’d be back up, then down. He would relapse. We tried this treatment, and we tried that treatment. He just kept persevering through it.”

“Every time there’s a setback, we rally the troops: Hey, it’s time to fight again,” adds Chris. “And that’s what we’ve been doing from day one.”

Johns Hopkins All Children’s was able to create an effective treatment plan for Cayden that included additional surgery, chemotherapy and radiation.  He also began speech, feeding, occupational and physical therapies at the Johns Hopkins All Children’s Child Development and Rehabilitation Center (CDRC.)

Creating a care continuum for kids like Cayden is only possible at a world-class pediatric medical facility featuring multidisciplinary care like Johns Hopkins All Children’s.

Two years on, Cayden has a few side effects of treatment, including a slight limp, that require ongoing rehabilitative care with weekly visits to the CDRC focusing on physical therapy, speech and feeding therapy. He also visits Johns Hopkins All Children’s for biannual MRIs and follow-up care.

“For children who have major illnesses, there are more ancillary services that are often needed to treat the whole child,” says Therese Montanari, director of speech-language pathology and audiology. “Johns Hopkins All Children’s offers multidisciplinary care for children like Cayden with a range of therapies that have been customized to meet each child’s needs.”

Today, Cayden is 9 years old and doing amazingly well. He’s been through a lot, but having survived two bouts with cancer, he and his parents are now focused on continuing to make progress through his visits to the CDRC. “This December, Cayden celebrates five years cancer free. The fact that Cayden is here … he’s our miracle son. He’s making great strides in school. We always tell people, whatever Cayden does, he’s going to be amazing because he’s already beat the odds,” says mom, Chelsea.

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