Faith, Hope, and A Search for Answers

In March 2020, 12-year-old Violet had just been thrust into life in a pandemic. Her school’s doors were closed out of abundance of caution, and she had just started taking classes virtually. When Violet started losing weight, experiencing mild panic attacks, and losing color in her skin, her parents sought help from her pediatrician.

Violet’s pediatrician chalked her symptoms up to poor diet and anxiety due to the pandemic. Soon after the diagnosis, Violet’s family moved, which resulted in her parents seeking out a new pediatrician for Violet. Her new doctor immediately knew something much bigger was going on. Violet was put on iron supplements, but she continued to struggle physically. 

“None of this made sense to us,” said Donne, Violet’s mother. “Violet went from being this strong and energetic kid to basically a shell of herself.”

Aside from not being able to keep up with her middle school basketball team, Violet was also experiencing strange recurring episodes – like freezing in place and being unable to move. Violet’s pediatrician re-ran her labs which were significant for moderate anemia, which prompted a referral to pediatric hematology at CHRISTUS Children’s. From there, Dr. Julie Voeller took on Violet’s care to determine the cause of her anemia. Many teenaged girls are diagnosed with anemia due to iron deficiency, but Violet’s iron stores were normal while her other blood counts were abnormal. Dr. Voeller ran additional tests, and as labs continued to return abnormal, more tests were sent over the next few weeks until everything finally came together.

Dr. Voeller diagnosed Violet with myeloid-lymphoid neoplasm with eosinophilia (MLN-eo), a hematologic neoplasm in which, due to an underlying gene rearrangement, the bone marrow makes too many copies of a type of blood cell called eosinophils. Too many eosinophils can cause significant tissue damage over time if left untreated. Violet’s diagnosis is extremely rare in pediatric patients, especially females, making this diagnosis very difficult and unusual.

The treatment for MLN-eo includes taking a daily immunotherapy medicine that specifically targets the underlying gene rearrangement that drives the eosinophil production. Following the diagnosis of MLN-eo, Violet’s doctors needed to do a baseline check of her organs to check for any damage due to the chronic hypereosinophilia. An echocardiogram concluded that Violet’s heart had suffered some damage leading to severe restrictive cardiomyopathy with pulmonary hypertension. After starting her immunotherapy and heart treatment, Violet slowly began to come out of the fog.

Little by little, Violet was back to feeling like herself for the first time in what felt like forever.

“Violet has an incredible quality of life now and that’s thanks to her team of physicians at CHRISTUS Children’s,” said Donne. “Everyone involved has been so wonderful handling Violet’s delicate situation.”

Due to the care Violet has received these last few years, Violet hopes to grow up to pursue a career in the medical field and help fellow patients like herself.

You can help support programs like the ones that helped Violet get the answers she needed by making a gift today at ChristusChildrensFoundation.org.

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