It took nine days for the Moore family’s life to turn upside down.
When two-year-old Evangeline Moore, lovingly known to her family as Jelly Bean, woke up with one eye crossed, her family immediately took her to an ophthalmologist. When Jelly Bean displayed no other symptoms, her parents, Katherine and Stephen, began to envision their precious, spunky girl in cute little glasses.
The ophthalmologist diagnosed Jelly Bean with cranial nerve VI palsy, a condition that occurs when there is a rise in pressure near the brain. The doctor scheduled an MRI for the next day, and on Thursday, November 20, 2014, Jellybean was diagnosed with DIPG.
Jelly Bean’s tumor was already very large, with new symptoms appearing constantly, and the doctors told the family if she didn’t start radiation within 24 to 48 hours, any sort of treatment could be futile.
“She was scheduled to start radiation 36 hours later, and we spent every one of those hours speaking with doctors in Seattle, Chicago, and at St. Jude’s trying to make the best decisions that we could given our ignorance, shock, and fog,” said Katherine.
As the grave reality set in that regardless of where Jelly Bean received her treatment, the outcome would undoubtedly be the same, the family opted to stay close to their home and support system at Children’s Hospital of Milwaukee.
“Even though we suspected the worst and began to prepare for it, in some region of our minds and expectations, there is still some unexplainable disconnect from reality—and the spoken diagnosis was shocking, surprising, searing, and simply unbelievable,” said Katherine.
As the shock subsided and reality crept in, Katherine and Stephen began to sob with overwhelming grief. While much of that day is now a horrific blur, Katherine remembers one thing quite clearly, “I was sitting in a chair by the window with Evangeline on my lap—she was only two. When I began to sob, she took a tissue, reached up, and began to wipe away my tears and smile at me. That moment defined her for the next five years.”
For the first few years, Jelly Bean responded well to treatment, and the Moore family tried to adjust to their new normal. Jelly Bean loved her family fiercely and almost always signaled for her two older sisters, Hannah and Sophia, after waking up from radiation sedation. In her second year of treatment, Jelly Bean also welcomed a new baby brother to the family. Her favorite activity was swimming, and she was undoubtedly happiest when the entire family could spend time together at a hotel waterpark.
But as time went on, uncertainty hung over the Moore family like an unrelenting dark cloud. In June 2017, the family was devastated once again to learn that Jelly Bean had developed a second cancer, glioblastoma in her left temporal lobe.
Because she had done well for an unexpected amount of time but then developed this second cancer diagnosis, the doctors felt like there was something very atypical about her case. They did some testing and found that Evangeline had a very rare genetic condition called CMMRD. Without getting into the specific details, it meant that her body was prone to developing cancer, especially high-grade gliomas. In blunt terms, she was a “cancer-producing factory.” She was at high risk for continuing to develop cancers of all kinds and was on a protocol to regularly scan her entire body, as well as a treatment to try and keep new cancers at bay.
In late March 2019, due to one of her routine scans, she was diagnosed yet again with a new tumor in her midbrain. On a follow-up scan for that tumor, they saw that in a matter of weeks a fourth tumor had begun to grow, a second DIPG. They didn’t even think the original had progressed, just that she actually developed a second DIPG tumor. While mapping her for radiation of the two new tumors, they found a fifth tumor in her right temporal lobe. Her sixth tumor was also a high grade glioma in her medulla, just below the pons. It presumably grew while she was receiving radiation for the new DIPG and tumor in her midbrain in May 2019. At the time of her death, she had six tumors, two in the pons, one in the midbrain, one in the medulla, one in the left temporal/frontal lobe, and one in the right temporal lobe. At least three of them were different forms of brain cancer. The other three were never biopsied or specifically diagnosed/identified.
“I have spent time staring at Jelly Bean’s face and then closing my eyes and trying to engrave every detail into my mind’s eye, and I am heartbroken because I just can’t store away enough detail,” Katherine wrote in a journal entry. “I can’t record her movements or gentle sounds in my being. Having these images of our day together will be a most treasured possession.”
In her final journal entry, Katherine wrote about the heartbreaking moment when, on the day after Jelly Bean’s seventh birthday, she had to sign her sweet daughter’s DNR: “Through tears, a wavering chin, and a pounding headache, I talked through each terrible scenario and agreed question by question that no lifesaving measures should be taken to preserve her precious life.”
Evangeline (Jelly Bean) Moore lost her battle to pediatric brain cancer on Wednesday, October 16, 2019.
While the Moore family tries to find their footing in the wake of their tremendous loss, Katherine reflects on how they navigated the horrific journey of pediatric brain cancer: “As a Christian, my faith was the center of my survival. When everything in our lives seemed to suddenly be on shifting sands, God was the only steady thing… I did not look to Him to change the situation, I just looked to Him—and trusted that that was enough.”
Written by, Jennifer DeGregorio, ChadTough Director of Communications