At 8, Surviving a Stroke and Leukemia Amid the Pandemic
Olivia Story woke up on another quarantined morning in July of 2020 with a persistent low-grade fever. It was the height of the COVID-19 pandemic, and hospitals overflowed with COVID patients –– Olivia’s pediatric doctor immediately assumed her fever was due to a virus.
Olivia’s mother Jennifer recalls doctors telling her that because of the pandemic, it would be best not to bring Olivia in.
Then, Olivia woke up with a blood blister on her lip. Despite doctors telling Jennifer that Olivia was fine, maternal instinct nagged at her. “I said, ‘something is telling me this is wrong.’” So she took Olivia in to the hospital. Doctors performed a Complete Blood Count (CBC), revealing an alarmingly high white blood cell count. Olivia was admitted to the hospital.
“It just hit us like a ton of bricks,” says Jennifer. “We had promised her that she would never ever be alone, regardless of what happens.” But because of the pandemic, Olivia’s parents could neither ride in the ambulance nor sit by her bedside.
Soon it was confirmed: Olivia had leukemia.
The family was in and out of the hospital for months, helping Olivia through a round of heavy chemotherapy that nevertheless saw her remaining her usual chipper self. Jennifer recalls doctors and nurses telling them that patients with Olivia’s characteristic optimism were what kept them going during hard times.
When Olivia finally came back home, she began a course of oral chemotherapy whose side effects, though intense, still failed to dampen her spirit or dull her bravery. But something still wasn’t right –– Olivia was very, very lethargic.
“She was like, ‘Mommy, I’m tired,’ over and over again. But she really was not a symptomatic child,” says Jennifer. Headaches here and there and tiredness were the only presenting symptoms of stroke at first. But Jennifer knows Olivia as only a mother can: if leukemia and chemotherapy amid an already-taxing pandemic couldn’t bring Olivia to lethargy, this had to be something more serious.
When Olivia awoke one morning in February with a tingling sensation in her right hand, Jennifer knew: with the family history of stroke among older relatives, Jennifer had seen these symptoms before, albeit much more visibly. She performed a series of at-home tests, asking Olivia to track her finger with her eyes.
The American Stroke Association encourages people to learn the acronym F.A.S.T. to help remember the warning signs for stroke. F.A.S.T. stands for:
• Face Drooping – Does one side of the face droop or is it numb? Ask the person to smile. Is the person's smile uneven?
• Arm Weakness – Is one arm weak or numb? Ask the person to raise both arms. Does one arm drift downward?
• Speech Difficulty – Is speech slurred? Is the person unable to speak or hard to understand? Ask the person to repeat a simple sentence like "The sky is blue."
• Time to Call 911 - If someone shows any of these symptoms, even if the symptoms go away, call 911 and get to a hospital immediately. Check the time so you can tell emergency responders when the first symptoms appeared.
When it became clear that her daughter was having a stroke, Jennifer rushed Olivia to her pediatric doctor, who admitted her to the hospital. It wasn’t until she was being examined by the teleneurologist that she began to convulse.
Olivia’s stroke occurred due to cerebral venous sinus thrombosis (CVST), a medical emergency which, if not identified and treated quickly, can be fatal. CVST causes about 0.5% of strokes in the United States.
“They gave her medication to keep her from shaking.” Jennifer says. “The teleneurologist told me there was a blood clot in her brain and we needed to act quickly.” Olivia was transferred to a hospital in Los Angeles and booked for brain surgery.
After her cancer diagnosis, three rounds of intense chemotherapy, and two doses of oral chemotherapy, one might think that a stroke caused by a blood clot in the brain would terrify any adult, let alone a child. But still, Olivia remained strong, with doctors and nurses commenting on her bravery. Jennifer recalls that Olivia was even awake for every single spinal tap.
Dr. Navdeep Sangha, Regional Medical Director of Stroke and Telestroke at Kaiser Permanente Southern California, and one of the doctors who treated Olivia, says had Olivia come to the emergency department with the same condition 10 years ago without emergent neurological or teleneurological evaluation, "she may have had permanent cognitive and physical disability."
But Olivia was in the ICU for only a day-and-a-half before moving back to the pediatric floor, a feat doctors called "amazing." Not even two days after the intervention, Olivia was getting up and walking, talking and eating.
"The medical care is similar as it was 10 years ago. However, the advancement in the recognition of stroke as a possibility in children, as well as the quick activation of the emergent pediatric stroke system of care, is what made a difference," says Sangha.
“She’s even my rock, too,” says Jennifer. “When I’m crying sometimes, she’ll say ‘We’re strong, we can get through this just like we have everything else.’’”
Olivia is through the hardest part of her leukemia and has healed astoundingly well from the intervention to the veins of her brain. But her risk of infection is still high, and there is still a global pandemic threatening the health of even healthy adults.
“We’ll still have to social distance a lot,” she says. “Our bubble right now is still very small.” Olivia’s friends visit her from the end of a driveway, and she still attends remote school for the time being. If Olivia catches even the seasonal flu, it will be very difficult for her immune system to fight, and it’s still much better to be safe than sorry. But Olivia, at her young age and with her experiences, is a beacon of hope.
“She’s so positive all the time,” Jennifer says, and doctors and nurses at Kaiser even began to refer to her as Wonder Woman. But Olivia has future plans that don’t involve a cape. When asked what she wants to be when she grows up, Olivia answers that she’d like to be a teacher.
“So I can teach little kids, and get to know them. You know, and help,” she says with a broad smile.
And with the miracles of modern medicine, early detection, and a healthy sprinkling of faith, Olivia will be more than able to achieve that dream many years down the line.