A little before noon, Erin got a second message. Something was definitely wrong. By 2:30 that afternoon, Erin was in an exam room, waiting for her pediatrician, when the nurse came in and saw how lethargic the baby was. She went to get the doctor right away, who looked at Tori, and asked if Erin was able to drive her to the emergency room in Rogers, Arkansas, where the family still lives.
Two scans and two hours later, mother and daughter were on an Angel One medical helicopter headed to Arkansas Children’s Hospital in Little Rock.
There was no time to grasp what was happening, says Erin. "When I got on the helicopter, I thought we were going down for a brain bleed. Then we got there, and Dr. Albert started talking to me about cancer."
Tori, the scans revealed, had a tennis ball-size tumor - AT/RT brain cancer. The words barely computed with Erin. "I told him, 'I must be misunderstanding something because when you say tumor, I hear cancer.' And he said, 'Yes. Do you want to sit down?’ I couldn’t believe something that terrible could be wrong with her."
Erin, who describes herself and husband Matt as "very analytical business people," says Dr. Albert’s calm, straightforward demeanor meant a lot to her from the very beginning. "I told him, my husband is driving here, and this news is going to destroy him. I need you to tell me what we are facing."
She says Dr. Albert patiently explained to the couple what the recommended course of action was, and prepared them for the probable outcomes. If no action was taken, Tori might have a few weeks. If a biopsy showed it was the aggressive cancer he suspected, further treatment might prolong her life by months. Erin says nobody encouraged them to hope for more than slowing down the progression of the tumor. Then something entirely unexpected happened during the biopsy surgery: Dr. Albert was able to remove the entire tumor.
A follow-up MRI confirmed the entire mass was gone. Erin calls it a miracle. "People say faith and prayer and science don’t go hand in hand," she says, "but to us, there’s no other explanation."
Due to the possibility of microscopic cancer cells left behind, Tori still had to undergo chemotherapy, a stem cell transplant, and radiation treatment. After one round of radiation at ACH, the Johnson’s insurance company transferred the remaining treatment to Kansas City and then Oklahoma City.
When Arkansas Children's Northwest opened in Springdale in 2018, they were able to transfer the rest of Tori’s treatment back to Arkansas. Erin says the impact on their family’s life was enormous. Before, treatments were a two-day affair, involving long road trips, expensive hotel stays, and overnight sitters for big sister Sydney. With a children's hospital just down the road, Tori could receive treatment and follow up visits with minimal disruption to family routines.
"It changed life for all of us," she says.
Throughout Tori’s treatment, Erin says her big sister, Sydney, has been "a rock star." Erin says Arkansas Children's Child Life specialists did a great job making sure Sydney's needs were also being met, even finding her a costume and taking her trick-or-treating at the hospital on Halloween. Erin also appreciated the "little and huge things" the PICU nurses did to help the Johnsons during their time there. "We call them angels on earth," she says.
"Their job was to take care of Tori, and they did that amazingly. But what they did for my husband and me, we can never forget." One thing she is especially grateful for is the advice of one nurse to get a journal to record her thoughts and questions. Erin says it was an invaluable tool for coping with the overwhelming amount of information and provided a record of Tori’s progress through her treatment.
The Johnsons, who both work as sales representatives, found their proactive, analytical personalities equipped them well for the challenge. "I sell cheese for a living. I don’t know medical terms," she says, laughing. But she pushed herself to understand and ask questions, sometimes repeatedly, until she understood. And now she’s an expert in a language she never wished to learn. "I felt like a toddler sometimes asking over and over, why are you doing this? But I want to be able to look Tori in the face when she’s 18 and say we made the best decisions we could. That we put her in the best position to fight."
And fight she did. Today, Tori’s routine scans show no recurrence of the tumor. Now four years old, she gets physical, speech, and occupational therapy for some developmental delays, but is expected to continue to thrive.