After Brain Surgery and Chemotherapy, Florence Gets a Fresh Start
An emergency room during a pandemic was the last place Eugenia and Richard wanted to be. But they desperately wanted answers.
A week earlier, their 22-month-old daughter, Florence, had started to feel sick, throwing up in the early mornings, with no signs of improvement.
An initial visit to their pediatrician’s office had them thinking it was the stomach flu, but after seeking a second opinion—from a doctor who had trained at Children’s Hospital Los Angeles and told them to go there immediately—Eugenia and Richard found themselves rushing across town. In the CHLA Emergency Department, Florence was examined and underwent a CT scan. Then came the devastating news.
“I just remember two physicians walking in with a box of Kleenex,” recalls Eugenia. “Our hearts sank, and our world just totally fell apart.”
Coordinated, expert care
Eugenia and Richard were told that Florence had a tumor in her brain, which pathology tests would later confirm was cancerous. More specifically, she had medulloblastoma, a fast-growing Grade IV tumor that needed to be removed.
Florence was admitted to the Pediatric Intensive Care Unit at Children’s Hospital Los Angeles that night. Before performing surgery, doctors needed to drain the buildup of fluid deep within her brain. Caused by the tumor, the fluid was blocking one of the ventricles. A few days later, after she was stabilized, Florence was ready for surgery.
Neurosurgeons Jason Chu, MD, MSc, from the Neurological Institute, and Mark D. Krieger, MD, Senior Vice President and Surgeon-in-Chief, removed the mass during a six-hour procedure. Then, after Florence recovered from surgery, oncologists from the Cancer and Blood Disease Institute took over. Because of the aggressive nature of medulloblastomas, Tom Davidson, MD, George Michaiel, MD, and Kim Bira, DNP, recommended that Florence start chemotherapy right away.
“We were so grateful for each provider’s expertise and truly felt like we were at the best place for Florence,” says Eugenia.
A spring renewal
Being a clinical nurse specialist, Eugenia knew the challenges the care team faced as they navigated COVID-19 while trying to keep immunocompromised patients, like Florence, safe. But she soon developed an even deeper appreciation for her daughter’s care providers.
“Throughout our entire journey, everyone was just so patient, understanding, kind and reassuring,” she says. “Even though they knew I was a nurse, they first saw me as a mom.”
After six rounds of chemotherapy and a stem cell transplant—and her latest MRI showing no signs of disease—Florence is “doing fantastic,” according to her mom. She hasn’t needed any blood transfusions, and her hair is starting to grow back. You wouldn’t be able to tell she ever had cancer.
“I feel like it’s spring, and the flowers are brighter, and the grass is greener,” says Eugenia. “Florence will need to be monitored for the next 10 years, but we know that moving forward we’re in good hands. We’re just so grateful for the amazing care we received.”
That gratitude led Eugenia to send the following message to Ara Balkian, MD, MBA, Chief Medical Director of Inpatient Operations at Children’s Hospital Los Angeles, which captures her family’s journey in more detail:
Dear Dr. Balkian,
I wanted to take a moment to thank you for rallying for our family when my daughter was diagnosed with a grade 4 brain tumor last August. You, Dr. Krieger, Dr. Jason Chu, and Dr. Jen Lau came to our bedside multiple times to check in on us, and to ensure that Florence had the best surgery and post-op care. Never in a million years would I have imagined that we would find ourselves so abruptly thrust into the patient/family side of health care in the height of a pandemic.
I can only imagine what an incredibly tough year it has been for you, especially as leaders in health care, and I wanted you to know that despite how chaotic it might have been, you still managed to impact our family on a very personal level. Florence had her end of treatment MRI [recently] and there is no evidence of disease. Treatment was successful! We are just so grateful for her health, the great care we received and for your incredible institution. We also couldn’t have had a better oncology team than Dr. Tom B. Davidson, Dr. George Michaiel, Kim Bira, DNP, and the nurses on 4 West.
In addition, I am so impressed with the nursing care and the fact that Florence managed to have no central line infection for the duration of her seven months of having a Medcomp apheresis catheter. The CVC [central venous catheter] NPs have admirable clinical expertise and the CVC classes for parents were very well designed. Moreover, every single nurse we encountered scrubbed the caps for 20 seconds, and let it dry for 10. The education and training to get a whole system to operate consistently in this manner should be celebrated and recognized.
It meant so much to receive personalized care.
Thank you so much from the bottom of our hearts,
Eugenia, Richard (my husband), Florence (2.5 years old) and Truman (4 months old)