Child’s Medical Scans Confound Her Doctors After A Harsh Diagnosis

For too many parents each year, the nightmare of hearing the words “your child has cancer” becomes a reality. How to cope, let alone explain the gravity of a terminal illness to a kid, is a pivotal question that comes without a guidebook. Should you cash in your savings and create some lasting memories? Or do you lace up your gloves and hunker down for an impossible fight?

One Texas family received the worst news: their little girl had a deadly illness, and the road to recovery was long and bleak. Despite statistics and scientific certainties, her family maintained unshakeable hope, and the results left doctors scrambling to uncover an explanation…

 Eleven-year-old Roxli Doss was an average kid. She attended church regularly, as the Doss family were active members. Outside school hours, she was happiest hanging out at the stables and learning to ride horses.

GoFundMe

 Nearing the end of her school year, Roxli started feeling a little off. At first, she chalked it up to a headache; she brushed it aside. Over the next few days, though, her pain wasn’t ebbing, and Roxli couldn’t ignore it.

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 Doing as sick kids do, she complained to her mom. Gena and Scott Doss looked into their parental bag of tricks and gave their daughter some children’s pain reliever. Headaches happen, after all, and they hoped this would do the trick.

Heavy

Days turned to weeks, and Roxli’s headaches grew stronger and more frequent. Her parents, concerned that their daughter was too young to experience incessant migraines, decided it was time to have their family physician weigh in.

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 The doctor ran tests as a precaution to see if there was any visible explanation for Roxli’s reoccurring headaches. Examining the lab findings, the doctor discovered an immediate root cause of the pain.

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Gathered in the doctor’s office, Gena and Scott were shattered by the news she delivered. Roxli’s results confirmed that she had an extremely rare kind of tumor called Diffuse Intrinsic Pontine Glioma, or DIPG.

Gena Layne Doss / Facebook

A childhood cancer diagnosis is a very particular kind of devastation, and the Doss family received the worst of the sort. The location of her tumor, at the base of her brain and top of her spine, made it impossible to remove.

Research Gate

Gena and Scott listened as the doctor explained how the disease would begin to effect Roxli’s body: “decreased ability to swallow, vision loss, decreased ability to talk, eventual difficulty breathing.” Doctor Virginia Harrod at Dell Children’s Medical Center words stung in their ears.

Alpha News

With no known cure, the best Doctor Harrod could offer for medical advice was aggressively treating Roxli with radiation. No, her cancer wouldn’t be cured, but at least it would buy her more time than what a typical DIPG diagnosis offers.

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Before they could accept this bleak sentence, they needed to get another opinion. DIPG was incredibly rare, so there was a chance of misdiagnosis. The moment they left the hospital, they reached out to their church community for prayers.

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Hopping on planes, the Doss family visited all the best children’s cancer centers in the country: Dana-Farber Cancer Institute in Boston, Johns Hopkins in Baltimore, University of Texas MD Anderson in Houston, and Texas Children’s Hospital in Austin.

Gena Layne Doss / Facebook

Across the board, oncology specialists told them the same thing: Roxli’s tumor was, in fact, DIPG. They listed the many bodily functions that would begin to shut down as cancer progressed. The general consensus was a rapid decline in breathing, heartbeat, swallowing, balance, and sight.

The Times Herald

Normally, patients facing a DIPG diagnosis live an average of 9 months after their initial diagnosis, but Roxli’s family refused to resign themselves to a deadline. Gena and Scott put their game faces on, determined not to give up hope that their daughter would be the exception to the rule.

USA Today

Praying for a miracle, the family became a fixture at the Dell Children’s Medical Center. Most children with a DIPG diagnosis fall between ages 5-9, so 11-year-old Roxli was even more of a medical anomaly.

US Health News

Six days a week for six weeks, Roxli toughed it out in a hospital bed. When her arms weren’t full of tubes, she was undergoing radiation to shrink the tumor below her brain. Along with treatment came the toll of nausea, fever, and constant fatigue. 

Life Daily

 Even in the midst of painful treatments, Roxli was in good spirits. The Doss family maintained extreme confidence in their faith, and their church community rallied to support them. A GoFundMe page was set up to help fund the unexpected costs of her immediate treatments.

Gena Layne Doss / Facebook

After completing rigorous radiation treatments, Roxli and her parents stepped back into the hospital, this time to see if her tumor had shrunken as they hoped. Gena and Scott watched their daughter lay down for yet another MRI, they wondered how their lives had changed so much in a few months time.

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Armed with the knowledge that 70% of patients see effective shrinkage in tumor size from radiation, Dr. Howard examined the results. “When I first saw Roxli’s MRI scan, it was actually unbelievable.”

Cincinnati Childrens Hopsital

 Roxli’s scans seemed impossible. Expecting to see a tumor reduced in size, Doctor Howard was astonished that the image of a child’s brain was completely free of any signs of a tumor. It had utterly vanished.

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The odds were so unlikely, Roxli made medical history. She’s the first DIPG patient to have their tumor fully removed by radiation therapy. In the eyes of the Doss Family, it’s simply an example of a miracle.

Gena Layne Doss / Facebook

 “Every day we still say it. It’s kind of our family thing that God healed Roxli,” Gena said. Looking at statistics of her prognosis didn’t falter the Doss’ strength of faith for a second. They kept their prayers and hope alive, and in the end, Roxli defied the odds.

Gena Layne Doss / Facebook

Still, the medical community was interested in how a result this positive came out of one of the worst childhood cancers. Dr. Hadjipanayis, director of neurosurgical oncology at Mount Sinai Health System in New York City, said the rapid elimination of tumor was unheard of, as was zero traces of its existence on an MRI.

Mount Sinai

Outlining an explanation for Roxli’s case, Dr. Hadjipanayis noted the possibility of the DIPG diagnosis as inaccurate. Granted, five of the top oncology centers in the country determined her cancer was the aggressive form of tumor, despite being unable to perform a biopsy.

MSKCC

 Whether a miracle of science or faith, we can’t be sure. For the near future, Roxli must continue getting scans and tests from her medical team periodically to ensure the cancer cells won’t return.

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 To stop the regrowth in its track, Roxli’s receiving immunotherapy, a newer cancer treatment that involves redirecting your own existing cells to fight the disease. So far, the little trooper is back on her 11-year-old feet, head held high.

Gena Layne Davis / Facebook

Scott’s smile could be heard in his words, “We didn’t know how long she would be healthy and look at her, she’s just doing awesome.” It goes to show that maintaining hope in the face of the worst diagnosis has value. Medical certainties are never 100%, as one other Texas family learned.

Gena Layne Doss / Facebook

On Mother’s Day in 2014, Darla Rodgers and her husband, Tim, were having a mellow celebration in their home. While they were watching a movie in their living room, Darla was struck with severe pains in her abdomen.

As the pain worsened, Tim didn’t want to take any chances with Darla’s health, so he drove her to a nearby hospital. He wanted a doctor to examine her just in case the pain was something serious, like appendicitis. 

Once at the hospital, doctors took a sample of blood from Darla and, after examining it, determined a short-notice CAT scan was warranted. This wasn’t at all what Darla and Tim were expecting. They prayed nothing serious would come of it.

After the CAT scan was complete, Darla and Tim waited anxiously in the hospital room for the results. After what seemed like hours, the doctor came back, and he had a grim look on his face…

He stared at the couple intently before pulling out the results of the CAT scan. He then spoke three words that made both Darla and Tim go numb with fear: “You have cancer.” Darla’s world instantly collapsed.

More specifically, the doctor told Darla Darla she had stage-four colon cancer, and within six months, she would die. She checked herself into the Huntsman Cancer Hospital in Salt Lake City, Utah, to begin an intense chemotherapy regimen in hopes she could beat the odds.

 Like nearly all patients who underwent chemo, she began to get sick from the constant radiation flooding her body. Finally, one doctor stepped in with a totally different plan… 

His name was Dr. Glynn Gilcrease, and he was an Associate Professor of Oncology. He feared the approach Darla was taking would have detrimental effects on her liver, so he put her on a lower chemotherapy dose. However, he also wanted to get a second opinion on the matter.

Dr. Gilcrease consulted with a close colleague and section chief for Interventional Radiology, Ryan O’Hara. After an in-depth discussion about the safest option for Darla, both men agreed on a potential solution… 

It was called radioembolization. The intricate process would launch millions of microscopic radioactive beads directly into Darla’s bloodstream, where they’d lodge themselves into her body and slowly destroy the tumor. It was a complicated procedure that didn’t always work.

The doctors also had access to SIR-spheres, minuscule spheres infused with a special radioactive isotope used for battling cancer. The level of radioactivity in SIR-spheres was much safer than most other cancer-fighting medications. With all these tools at hand, Darla’s operation began…

Dr. O’Hara and six of his colleagues spent hours operating on Darla. For eight days after the operation, she went through intense, and often painful, specialized treatments. However, on the ninth day, miraculously, she felt better than she had in months.

She didn’t want to get her hopes up, however. Cancer, as she knew, is ruthless, and it can creep up again at any moment. A few weeks after her invasive operation, doctors ran some tests and came back to her with news…

The tumors on her lungs and liver had disappeared! Her body took to the SIR-spheres, and for the first time in what felt like forever, she didn’t need chemotherapy. She also became very close with a woman who went through a similar experience.

Her name was Suzanne Lindley, and she was a 19-year cancer survivor. She was also the founder of a Texas-based cancer support group called Yes! Beat Liver Tumors. Suzanne, having lived through cancer herself, took Darla under her wing.

Not only did Suzanne shower Darla with emotional support, but she made Darla the poster child for her support group. Darla embraced the opportunity and involved herself in as many fundraisers and opportunities to help others as possible.

A lot of amazing opportunities came along because of Darla’s involvement with Suzanne’s group. She was invited to the Academy Awards one year, and she went to the People’s Choice Awards. But neither of those compared to one incredible event she took part in…

Darla walked down the runway for a special fashion show that featured cancer survivors! It was an incredible opportunity to spread a positive message for those who were braving a battle of their own. Of course, Darla couldn’t have done any of this without one particular person…

Her husband Tim showed a level of support and understanding matched by no one else in her life. He was by her side the entire time and always made sure to keep her mood up. Finally cancer free, Darla made it her mission to live every day to the fullest! 

 

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