Fort Worth, Texas,
06
September
2019
|
05:44 PM
America/Chicago

'He Was A Ticking Time Bomb'

Teen battles Pineal Parenchymal Tumor with Intermediate Differentiation (PPTID), a rare form of cancer

By Ashley Parrott

Christian Englert was born with genetic hand tremors, like many of his family members. The tremors were never an issue, especially when he was drumming or doing school work … until he turned 15 when they helped diagnose a rare brain tumor.

At his annual physical, Christian mentioned his worsening tremors to his doctor and was quickly referred to a neurologist. As a family, they decided to go ahead with an MRI for peace of mind. Christian’s hand tremors had been the only noticeable change so there wasn’t an excessive cause for concern.

“I was with Christian at the very first MRI that we thought was just going to be routine,” Christian’s mother Shanna Englert said. “They had told us they weren’t going to be using contrast, but they came in toward the end and said they wanted to just go ahead and do it. At that point, my mommy alarm was already going off because it wasn’t what we were told originally.”

Within a few minutes, the MRI started again but Shanna was called out of the room. Christian’s neurologist was on the phone. He explained he wouldn’t normally give this news over a phone call, but the urgency was critical. There was a mass on Christian’s brain.

“There was a six week period between the MRI and Christian’s original physical,” Christian’s father Martin Englert said. “At one point we were just about to cancel the MRI because no one thought it would show anything serious. What if we hadn’t done the MRI? We could have lost him.”

The following hours after that phone call became a blur, according to Shanna. They immediately went to Cook Children’s for severe hydrocephalus, a condition caused by the tumor and resulted in too much fluid and pressure on the brain.

“When we got to the hospital everyone was confused because he didn’t have any symptoms. He wasn’t tripping, no headaches and no nausea. There was nothing on our radar saying this MRI could show something so there was no preparation on our end,” Shanna said. “I went from picking him up at school at three o’clock to him being in brain surgery the next day. His surgeon called him a ticking time bomb.”

Christian went into surgery the following morning to relieve the fluid and pressure, and take a biopsy of the tumor. Ten days later, he was diagnosed with Pineal Parenchymal Tumor with Intermediate Differentiation (PPTID), a rare form of cancer with both malignant and benign cells with only five prior diagnosed cases in the U.S. since 2000.

“The list of possibilities was so long. As a mom, that list overwhelmed me more than the actual cancer diagnosis because you have all these dreams and plans for your child,” Shanna said. “What is life going to look like after treatment? There were just so many unknowns, and as a parent to hear all of this, it was just like all these dreams came crashing down.”

With so few cases to study, Jeffrey Murray, M.D., medical director of Neuro-Oncology at Cook Children's, and John Honeycutt, M.D., Cook Children's medical director of Neurosurgery, had to research the production of a plan to safely shrink and remove Christian's tumor.

“We began creating a treatment protocol after review of the medical literature and discussions with colleagues across the country,” Dr. Murray said.

Dr. Honeycutt performed Christian’s initial surgery to relieve the pressure on his brain, as well as the tumor removal surgery three months later.

"A tumor in the pineal gland is an unusual area in the brain because it’s in the center. It’s more difficult to get to and it has a lot of important structures,” Dr. Honeycutt said. “We went in with an endoscope and navigated down to the bottom where there’s a membrane and poked a hole in it. It created a detour for the spinal fluid called an ETV.”

Christian later underwent additional surgeries to remove the tumor, insert and remove his port for chemotherapy and realign his right eye, which occurred as a result of his prior brain surgeries.

Six months later, after four total surgeries, two rounds of chemo and 30 treatments of radiation, Christian was deemed to have no evidence of disease. To this day, the tremors aren’t related to his tumor but acted as a signal that something had changed.

“Even though we’re now a part of a group that we didn’t want to be in, it’s turned out to be more of a joyful mission. Cook Children’s has become a part of our family. Dr. Murray, Dr. Honeycutt, nurses and staff that support them are people that are a part of our lives,” Martin said. “When we walk in there it does feel like a triumph, but it also feels like we have an opportunity to bring hope to the folks there. We know there are some stories that don’t end as ours did. We want to continue to be a light for others.”

Christian has now been in remission for four years. He still loves to play the drums in his spare time and has just started his sophomore year at a local university. He remains an advocate for childhood cancer awareness and the Make-A-Wish Foundation.

Learn about #erasekidcancer

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