Connor Rohde, Atypical Teratoid Rhabdoid Tumor (AT/RT)

20 Months Old at Diagnosis

Connor RohdeConnor was just 20 months old in 2011 when his family received the worst news they could imagine. A rare and aggressive cancer called Atypical Teratoid Rhabdoid Tumor (AT/RT) was found in his brain. Requiring immediate action and with a small chance of survival, Conner underwent multiple surgeries to remove the tumor and relieve pressure on his brain within just the first few weeks of treatment. He then began 4 months of high dose chemotherapy, followed by 30 proton radiation sessions, and 6 months of maintenance chemotherapy. Luckily, the treatment was successful, and Conner went into remission, but was left with late effects.

Late effects are problems related to cancer that occur or persist after treatment is completed. Unfortunately, three out of five survivors develop late effects. The high dose chemotherapy that Connor received left him with stretched ligaments in his hands and ankles which require him to wear ankle braces, as well as sensory issues that make it hard for him to play outside and eat certain foods. To help alleviate some of these issues, Connor receives occupational and physical therapy every week.

“Watching your child suffer the horrors of treatment in order to have a chance at life is something no parent should ever have to experience. Research is needed for less harsh treatments and better survival rates.”

While Connor was getting stronger after his first battle with cancer, doctors found a second tumor located near Conner’s brain stem. Treatment options for a tumor in this location, and based on Conner’s history were limited. When the doctors laid out the options, Conner’s family decided to move forward with an experimental drug that had shown success in Phase I and Phase II clinical trials. The family relocated to St. Jude’s Hospital and Conner began his new treatment. At first, the treatment was successful in shrinking his tumor, but his most recent scan showed that the tumor has remained the same size. Now, doctors are working on new treatment options in hopes that Connor can one day be cancer-free.

Now 4, treatment hasn’t been easy for Connor, but he still loves all the things a child his age who has not battled cancer does – listening to music, singing and dancing, and watching movies with his brother. His family describes him as a fun loving pre-schooler who isn’t letting his treatment or late effects get in the way.

For more information on late effects of cancer treatment, visit curesearch.org/Late-Effects-of-Treatment-for-Childhood-Cancer.

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