KELLEN

KELLEN’s STORY

Kellen and her twin sister, Kit, where born in February of 2022. Despite being preterm, both girls were healthy and able to avoid the NICU upon delivery. Of her siblings, Kit and older brother Talen, she is the sweetheart–very happy, always smiling, and doesn’t know a stranger. She has been hitting all of her milestones and developing such a kind heart.

Just after Thanksgiving we noticed she was significantly leaning to her left (when sitting and crawling). A couple days later, her head started drooping to the left, as well as her eye and mouth. She received a neuro consult and we were admitted to get a timely MRI. Within 35 minutes I was met by a General Pediatrics Attending Physician to receive the news of her brain tumor. Based on the MRI findings, she was immediately admitted to the PICU. She had a drain placed on the top of her head to relieve the buildup of CSF and the neurology team immediately began prepping for her surgery that would occur the next day. The tumor was extremely large, creating a vast amount of CSF buildup, and pressing on her cerebellum. The surgery was long–a little over 4 hours. Her surgeon indicated it was not an easy surgery/retrieval and he was unable to remove the tumor entirely due to its location. He wanted to avoid damaging the nerves it was centered around as they control her ability to properly eat, breath and control her face. Since surgery, her CSF has built up a few times, causing swelling in her head and the need for a lumbar drain. Another unfortunate complication of surgery is a large blood clot.

The mass that was extracted was sent to OSF pathology and St. Jude’s to be examined. As of four weeks post surgery, we still didn’t have definitive results. On 12/29, our primary oncologist informed us that Kellen’s tumor contained characteristics of two types of cancers, but also lacked some distinctive features hindering them from knowing with 100% certainty the type of cancer she has. They have diagnosed her with ETMR–embryonal tumor with multilayered rosettes, despite actually having the rosettes in the genetic makeup of the tumor.

Her treatment is broken down into two phases–induction chemotherapy and consolidation chemotherapy. The former will take place at OSF Children’s Hospital in Peoria, Illinois. The latter will be completed in Chicago, Illinois as there are no open studies available for her in Memphis. Her treatment cycles will be inpatient and last for approximately a month at a time. During each cycle, she will be treated with chemo and then given time for her counts to recover and deal with potential side effects. To administer treatment, a central line was put in (another surgery), a lumbar puncture was done (to check her spinal fluid), as well as a baseline audiology test (will most likely suffer from some hearing loss due to aggressive chemo).