For all the heartache the pandemic has brought the world, for 12-year-old Baylee Millett of Elkins and her family, it opened the door to help save her life.
In April 2020 – during the first wave of lockdowns – Baylee was like any other 10-year-old kid: running, jumping, climbing trees, and playing with friends in their outdoor “bubble.”
“The week before Easter, I took Baylee canoeing, and there was no sign of anything wrong,” Nick Millett, Baylee’s dad, said. “She was swimming and paddling around, having a blast and doing everything a 10-year-old should be doing.”
A few days later, Baylee started complaining that her feet hurt – odd, but Nick didn’t think too much of it. However, once Nick dropped Baylee off at her mom’s house, the pain worsened.
“We took a walk to get some fresh air, and Baylee told me her feet were hurting,” Jodee Hensley, Baylee’s mom, said. “The next few nights, she was awake in the middle of the night crying in pain. Then the pain moved into her knees, and that’s when I started to worry.”
Jodee’s internal mom radar was alerted because Baylee never complained about anything. But by Easter Sunday, Jodee knew something was wrong.
“I debated taking her in because of the COVID-19 risk and how difficult everything was,” Jodee said. “But Baylee had started limping, and her knee was swollen, her foot hurt, and she had swollen lymph nodes.”
Jodee called their local quick clinic, which suggested bringing Baylee in for a few tests. Strep and mono came back negative, but the doctor had a gut feeling something wasn’t right and sent them to the ER. The ER physician saw Baylee right away, her bloodwork was drawn, and their family’s lives changed forever.
An unexpected diagnosis
As soon as Baylee’s bloodwork came back, the ER team recommended Baylee transfer to WVU Medicine Children’s in Morgantown for a higher level of care. Baylee’s parents were told that she could have a bad infection – or it could be cancer. Jodee and Baylee headed to Morgantown, and Nick left his family’s Easter celebration to meet them.
Due to COVID restrictions, only one person was allowed in with Baylee at a time. Jodee and Nick rotated being by Baylee’s bedside as they anxiously awaited the results from additional bloodwork, a bone marrow biopsy, and a spinal tap.
Baylee was admitted to the hospital, and the following day, the Oncology team gave them Baylee’s diagnosis: acute lymphoblastic leukemia (ALL).
WVU Medicine Children’s: A home away from home
Baylee started treatment for her leukemia immediately, and Jodee and Nick knew right away that being at WVU Medicine Children’s Hospital was the best decision for their daughter. It instantly became a home away from home for all three of them.
“The staff is truly amazing; they are now our family,” Jodee said. “Baylee has three favorite nurses who were with us from the beginning and every step of the way since that first night.”
The first round of treatment was rough for Baylee. She started losing her hair, and the steroids caused diabetes, which needed to be managed by checking her sugars and counting her carbs. Baylee took it all in stride, working toward her goal of getting home to her siblings.
“Baylee was always in a good mood, even when things were really rough for her,” Patrick Tomboc, DO, pediatric oncologist at WVU Medicine Children’s, said. “She was steadfast in wanting to get better and focused on getting through therapy.”
After her first three weeks of treatment in the hospital, Baylee was discharged and allowed to continue her treatment on an outpatient basis. She went home with a PICC line and needed to check her sugar levels at 2 am every night, but Baylee didn’t mind.
“She was so excited to come home and see everyone,” Jodee said. “Her looks had changed so much even in three weeks. Her belly was swollen and her hair was thin and falling out, but she was home.”
Jodee and Nick traded off taking Baylee for treatment, which required them to stay in Morgantown for four-to-seven nights at a time.
Baylee was thrilled to be an outpatient – she wanted to stay out of the hospital at all costs. However, in November 2020, Baylee was admitted again to the hospital during her last round of treatment.
“Her body just had enough,” Nick said. “She had a fever, which turned into an infection that caused a terrible rash. She was in the hospital for more than three weeks over Thanksgiving.”
That was tough on Baylee and tough on her big family. Jodee and Nick are divorced, and both remarried, and each family had to tackle the hardship of having either Jodee or Nick gone all the time.
“It was difficult on both families,” Nick said. “I’d be gone physically one week and mentally the next. It was hard for all of us to process.”
“Their hearts go above and beyond”
The mental strain is typical for families with critically ill children. Baylee’s family felt supported and loved, both by their family and friends at home and WVU Medicine Children’s.
“If you know someone whose child is going through cancer, reach out in support,” Dr. Tomboc said. “Offer to help in some way. These families are going through a tremendous challenge, and it takes so little to change the child’s day.”
Baylee’s parents credit the incredible staff for going above and beyond to make her comfortable and happy. From nurses playing board games and decorating her room to Child Life setting aside an American Girl doll during the annual Christmas store for patients, Baylee was surrounded by compassionate caregivers who significantly impacted her time in the hospital.
“They made Baylee feel so special. They are all incredible at their jobs,” Jodee said. “Their hearts go above and beyond their job descriptions.”
The silver lining
The pandemic brought an unexpected silver lining to Baylee’s cancer battle: life wasn’t just on hold for her; it was on hold for everyone.
“It would have been so tough on Baylee to have life go on around her during her treatments,” Jodee said. “But everything was shut down. No one was playing soccer or going into school. She went back to school this fall with her classmates, and many of them didn’t even know she was sick.”
In early 2021, Baylee moved into the maintenance phase of her treatment, where she currently remains. She sees her oncology team – who have also become like family – once a month for bloodwork and any medication adjustments.
“We’re very optimistic about Baylee’s survival,” Dr. Tomboc said. “After she completes treatment, we’ll see her once a month for the first year and then watch her less closely as her risk decreases. Her outlook is really good.”
Shortly after starting the maintenance phase – and only a month after being discharged from her extended hospital stay – Baylee was back on the ski slopes with her friends.
“Baylee’s a light. She’s just the toughest person, both mentally and physically,” Jodee said. “She’ll get a spinal tap and be at a swim meet three hours later. Her soccer team won their championship this spring, and she was playing in every game. You’d never know she was sick.”
Baylee’s active lifestyle makes her parents proud and overcome with gratitude that her story has ended positively.
“Baylee’s cancer has made everyone stronger,” Nick said. “Baylee can now face any challenge in her future and overcome it. She got through this; she can get through anything.”
Baylee is WVU Medicine Children’s 2022 Children’s Miracle Network Champion Child.