In February 2018, when Emmy was 5 months old, she began running fevers of 105. Her parents took her to the pediatrician, who ran bloodwork and diagnosed Emmy with a urinary tract infection. A few days later, the doctor called Emmy’s parents to share that her bloodwork results indicated the UTI had caused a secondary kidney infection. The doctor instructed them to finish Emmy’s antibiotic treatment, then schedule a kidney sonogram four weeks to later to make sure there was no lasting damage.
When Emmy’s parents took her in for the sonogram one month later, they had no idea how their lives were about to change. During the scan, it was discovered that Emmy’s right kidney was three times the size of her other, normal one. The radiologist explained that the initial infection likely caused an abscess on her kidney, which could be easily drained. Thus, Emmy was admitted to the hospital for what her parents remember as “seven long days”. It did not take long for the doctors to realize Emmy’s condition was much more serious than an abscess—it was Nephroblastomatosis, which is considered a precursor of Wilms tumor.
Shortly after her diagnosis, a line was placed internally in Emmy’s chest. At six months of age, she began receiving weekly rounds of preventative chemotherapy. All went well with these treatments and scans showed that her tumor was shrinking. Not too long after her first birthday, Emmy became really sick and was admitted to the hospital with sepsis. Her internal line was deemed to be the source, so she had surgery to remove it. At the time, it was believed Emmy was finished with chemo. However, her parents soon learned that another round was recommended, so Emmy once again underwent surgery for a port placement.
This next round of chemotherapy did not go as well as the first. Emmy experienced every side effect in the book; when she wasn’t visiting the doctor for anti-nausea meds, she was in the ER for fevers (every other week) or admitted for neutropenia (once a month) or being monitored while receiving antibiotics (for low blood counts) because her first dose had caused seizures. Emmy finally finished this round of chemotherapy in January 2019. Scans continued to show shrinkage as well as a spot on Emmy’s kidney that was suspected to be dead tissue. A biopsy was not recommended at the time, but doctors did advise that Emmy receive another scan in 4-6 weeks.
This follow-up scan was done in June 2019, after Emmy’s family relocated from Kansas to Florida. Their new medical team recommended removing Emmy’s right kidney. Emmy’s family sought a second opinion in Atlanta and endured many delays and insurance conflicts along the way. Emmy’s next scan was not conducted until October and, unfortunately, the results showed a dramatic increase in tumor size. Emmy’s family had been told it was possible the tumor could metastasize to her unaffected kidney anytime through the age of 9-10 years. They never expected the tumor to grow after a year of chemotherapy.
In November, Emmy’s right kidney and surrounding lymph nodes were removed by the Nephroblastomatosis specialty team in Boston. Her once-perfect kidney was completely covered in large tumors. Biopsy results later confirmed her parents’ worst fears—the tumors were malignant. Upon hearing this news, Emmy’s mother said her “heart shattered into a million pieces.”
This diagnosis marked Emmy as the only child with Nephroblastomatosis, on one kidney versus two, who received a year of chemotherapy and still progressed to Wilms tumor. Because of the risk for residual microscopic cancer cells in Emmy’s bloodstream, she once again began chemotherapy. She lost her golden curls in early January. On February 13, she had 100% clear scans for the first time since beginning her cancer journey! Emmy will continue to receive chemo every three weeks until April 20.
Despite having fought cancer for most of her young life, Emmy is a sweet, smiley little girl. When she sees other children crying in the outpatient clinic, she will walk over to them and sing “It’s okay to feel sad sometimes…little by little, you’ll feel better again!”
Every child who has been diagnosed with childhood cancer inspires us to Rally On to find better treatments with fewer long-term side effects and, ultimately, cures. Please join us in the fight against childhood cancer by making a donation or setting up your own Rally fundraiser today.