A sweet, buttery scent permeates the kitchen, like a giant olfactory hug.
Sugar cookies baking.
There are more batches to come…if only 9-year-old Amalia could stay still long enough to make them. She’s with her family on a summer afternoon—her mom and dad and younger siblings, Logan and Charlotte. She’s a ball of energy, bouncing from place to place, showing off her cheerleading skills one moment—modeling a funny hat the next. She is joyful.
If Amalia could stay still long enough—an observer could marvel at the fiery red locks of hair. The dusting of freckles across her nose. The long, perfect lashes. And eyes that give away… maybe just a hint of an extraordinary story.
How It Began
Amalia at age 2 was delightfully ordinary. Exploring life with the sense of wonder that 2-year-olds possess—each discovery greeted with smiles and giggles. But one day, a strange outbreak of rashes appeared on her little body, perplexing her doctors. A dizzying cascade of symptoms followed. A high fever. Body pains. Pneumonia. Within 12 hours of admission to Children’s Hospital of Wisconsin, there was a diagnosis: Pre-b cell acute lymphoblastic leukemia (ALL).
“Our world got completely flipped upside down,” says her mom, Kari. “You don’t hear anything else but the word: Cancer.”
Ordinarily, this part of Amalia’s story still might have ended in a decisive victory. After all, great strides have been made in treating children diagnosed with ALL. With appropriate medical care, the cure rate is now about 90 percent.
Amalia was treated near the family home in Wisconsin for two years and went into full remission. But two years later—a routine follow-up brought bad news … the cancer had come back. Thus began a hope-sapping merry-go-round of more treatments, more testing, a brief window of remission, and then, each time, the return of the relentless cancer cells.
Amalia is in that 10 percent of children who simply don’t get better with the protocols that work so effectively for most kids diagnosed with this disease. Her parents put her journey in perspective this way:
- Amalia has spent 75 percent of her life in hospitals.
- Seven of her 9 years were spent either in the hospital or in treatment.
It is not hard to imagine that a family would begin to despair.
“You’re told the chemo treatments are no longer working, and your little girl is looking at you, like, ‘Now what do we do?’” Kari says.
By this time, the family had moved to Florida, and Amalia was being treated at Johns Hopkins All Children’s Hospital. But simultaneously—something exciting was happening. There was anticipation over a type of immunotherapy for children whose leukemia does not respond to standard treatment. Johns Hopkins All Children’s had just been designated as the first certified pediatric treatment center in Florida to offer CAR-T (chimeric antigen receptor T-cell) therapy.
“The wonderful thing about immunotherapy is that it is targeted,” says pediatric oncologist Ben Oshrine, M.D. “CAR-T uses the patient’s own immune cells that have been removed from the patient, modified in the lab to specifically recognize and attack a certain protein on the leukemia cells, and then reinfused into the patient to create what are called serial killer cells. They can proliferate and kill multiple cancer cells.”
The family already had a comfort level with the quality of care at Johns Hopkins All Children’s. The Cancer & Blood Disorders Institute, recently ranked on U.S. News & World Report’s list of the top 50 pediatric cancer programs, is not only committed to meaningful research, but also offers some of the latest treatments and innovative therapies.
Now Amalia had a brand new opportunity, and a new reason to hope. She would become the very first patient to receive CAR-T therapy from the hospital’s certified treatment center.
“It definitely felt like a new chapter in our story, like a door had opened,” Kari says. “The idea that she could actually have a life outside of hospitals, and she could become healthier so much quicker.”
Amalia had CAR-T therapy in late October. The infusion went beautifully, with her family at her side, and with her physician, pediatric oncologist Gauri Sunkersett, D.O., overseeing her care and checking in to chat.
“Dr. Sunkersett was amazing with her,” says Amalia’s dad, Jerry. “Actually the whole staff was amazing. They made it so much easier for her to get through everything.”
Within a few weeks, Amalia was out of the hospital. Just before Christmas, they returned for a follow-up visit. Sunkersett, beaming, held out the paperwork with the lab results: Amalia was cancer-free. The best possible Christmas gift.
Life Beyond Illness
Seven months later, Amalia is thriving. A happy live wire—she is making up for lost time.
“I can play with my friends. I can do gymnastics. I can ride my scooter….” Amalia recites an endless list of activities that have eluded her until now.
“It’s not just the lab results,” Kari says. “It’s seeing how she acts. She’s so happy and healthy. She’s doing things she hasn’t been able to do in so long. Every day that she’s healthy is a gift.”
Just outside the family home, Amalia has jumped on her bike, and she’s picking up speed.
Leaning in over the handlebars, her face is the very picture of concentration—eyes fixed on the destination ahead—one she’s chosen for herself.
She flies by in a blur.
Amalia—fierce and free.