By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
Alexa Masiongale is fierce and feisty. Just ask her mom and her physical therapist.
Kayla Masiongale and Lindsay Schaefer have watched as Alexa has found her footing again, mentally and physically, after a double dose of lifechanging news.
In July, Alexa was getting ready for a summer of cheerleading competitions when she was diagnosed with acute lymphoblastic leukemia and started a 2½-year treatment journey at Riley Hospital for Children.
Things went from bad to worse for Alexa and her family the next month.
Alexa suffered an infection following her first round of chemotherapy and became septic. Her parents, who live in Muncie, rushed her back to Riley, where she ended up in the pediatric intensive care unit, intubated and on a ventilator for three weeks.
In fact, that’s how she spent her 11th birthday – on a ventilator.
When she recovered, she had lost the use of her legs.
Alexa has spent the past several weeks in the Riley inpatient rehabilitation unit, working with Schaefer and other therapists as she relearns how to walk and complete everyday tasks.
It has not been easy – for Alexa or Schaefer, they both acknowledge.
“Physical therapy was not always your favorite, was it,” Schaefer said to Alexa during a session last week. “You didn’t start off super happy, but I saw the potential. With a lot of faith … “
“And a willing heart and a cheerful spirit,” Alexa interjected.
That phrase is something Schaefer turned into a mantra to encourage Alexa, especially in the most difficult times when Alexa admits to doing a lot of “screaming and yelling.”
When Schaefer first met Alexa, the sixth-grader could barely sit up or move her hands and feet. She was sad and scared and resisted the exercises Schaefer and other therapists wanted her to do.
“One of the biggest things in Alexa’s way was fear,” Schaefer said. “A big part of physical therapy is helping you feel safe and overcoming those fears, giving you the tools and pushing you through when you feel like you can’t or don’t want to.”
Alexa nodded as Schaefer continued.
“As physical therapists, we would never ask you to do something that we felt you couldn’t do.”
One of the biggest feats Alexa mastered recently was being able to climb up into her bed, which is 26 inches high.
“I couldn’t do that two days ago,” Alexa said.
As she practices climbing stairs and walking unassisted (with only her mom or Schaefer holding her hand), Alexa couldn’t help but be proud of herself.
Even though there are no stairs inside her home, she wants to be able to navigate the two steps outside the house, as well as any staircases at the homes of friends and family.
“It’s even cooler that she’s been brave and worked on doing the stairs while here. We work through things here so we don’t have to tackle the scary things by ourselves,” Schaefer said.
“You are brave, aren’t you,” her mom said. “I wish your dad could be here to see you walk without the walker.”
Kyle Masiongale comes to Riley every night after work, while Kayla has been with her daughter the entire time, except for one day when she had a medical procedure herself.
Discharge day is Wednesday, just in time for Halloween, which Alexa is looking forward to celebrating with her brother, Gavin. She plans to dress up as a health teacher for trick-or-treating.
Alexa, who is under the care of oncologist Dr. Amanda Saraf, has two more years of treatment ahead, but she has fought through so much already.
“Look how far you’ve come,” Schaefer added. “From screaming to sitting up in bed to walking across the room just holding someone’s hand.”
Asked what’s been the hardest part, Alexa said it was the feeling of fear. And the best part?
“Hanging out with her,” she said, pointing to Schaefer.
“It’s definitely been a journey for Alexa and Lindsay together,” Kayla Masiongale said.
To see the progress her daughter has made is nothing short of amazing.
“At first, she didn’t want to talk to anybody. She wanted to be alone. Her life changed in the blink of an eye. Now, she’s a whole different kid.”
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org