“It’s the people and the providers’ hearts that made the difference for Mia. It’s the connections she made that helped her do what she needed to, even when it hurt, and built her physical and emotional strength, preparing all of us for a positive transition home.”
March 2024 11-year-old Mia was diagnosed with Rhabdomyosarcoma (RMS), a rare, cancerous tumor that develops in muscle cells. The diagnosis was revealed following an oral procedure to remove a mass behind her back molar in her mouth.
The tumor continued to regrow, and Mia needed to begin chemotherapy treatment and have an emergency tracheostomy and gastrostomy tube surgery due to the aggressive tumor growth. Mia spent time on a ventilator and experienced three rapid response calls, leaving with intense neuropathy, or shooting pain, all over her body, however, she continued to fight.
Once Mia was able to gain enough strength, she was transferred to Children’s Specialized Hospital’s (CSH) inpatient rehabilitation facility in New Brunswick, New Jersey.
Inpatient Rehabilitation
When Mia arrived to CSH, she received a customized rehabilitation plan that focused on addressing her function, pain, and mental well-being. This included 24-hour nursing and medical care, along with intense daily physical, occupational, speech and language, and recreational therapy.
Mia’s physical therapist, Marissa Corveleyn, noticed how much pain Mia was experiencing in her lower extremities, and that she feared her feet being touched. To help, Marissa focused on building a rapport, as she knew this would be critical early on in helping Mia to get out of her comfort zone during their therapy sessions. As physical therapy sessions progressed, so did Mia’s abilities. “Mia worked very hard and even though she started off standing for only a few seconds, she progressed to minutes and eventually taking steps,” Marissa explains.
As part of Mia’s physical therapy, she qualified to use the ZeroG® Gait and Balance System, a tool used to protect patients from falls while providing dynamic body-weight support. She used this to build confidence to walk without the walker, knowing the harness would catch her if she lost her balance. “As a therapist, using the ZeroG® allowed me to challenge Mia with higher level balance tasks and stairs, which she needed to do to prepare her to go home. Together, with the help of Mia’s wonderful parents Kristen and Pete, Mia made excellent progress towards her goal of walking and conquering the stairs,” Marissa continues.
In occupational therapy, Mia’s therapist, Hannah Fingerhut, focused on restoring her independence to allow for less reliance on her parents. “Our sessions also focused on me learning who Mia was outside of her diagnosis and symptoms,” highlighted Hannah. Hannah and Mia would practice arm exercises, which helped Mia learn how to apply her makeup and skincare.
Due to a loss of appetite, regressed eating habits, and her tracheotomy tube, Mia required speech and language therapy. She worked closely with speech-language pathologist, Alex Magariello, doing cooking classes, gaining strength and coordination to swallow, and eating by mouth again.
Mia went from relying on caregivers to help her with day-to-day tasks to being able to do them independently again. In time, Mia’s dialogue changed from “I can’t” to “I can.” “In the beginning, Mia was not confident, but as she started doing exercises, and eventually was able to walk on her own, she felt very proud and positive. Her therapists were great at finding exercises that Mia looked forward to doing,” stated Mia’s mom, Kristen. “I wouldn’t be where I am today without the help of my therapists at CSH,” Mia added.
Road to Recovery
Mia stayed at Children’s Specialized Hospital a few weeks at a time in between her chemotherapy treatments until August 2024 when she was able to return home to Long Island, New York.
“The best part about Children’s was the training my husband and I received on Mia’s medication. Before her discharge, there was a 12-hour stretch that we administered all her medications, performed trach changes, and did everything we would need to do at home,” Kristen highlighted. “We took every class that was available, from tracheostomy emergency classes, to CPR, and more. There’s no other place we would have gotten that from, and we’re so, so thankful.”
“Have faith, trust the experts, surrender a little,” Kristen stated when asked what advice she would give other parents in similar situations. “It’s the people and the providers’ hearts that made the difference for Mia. It’s the connections she made that helped her do what she needed to, even when it hurt, and built her physical and emotional strength, preparing all of us for a positive transition home.”
Today, Mia is in early cancer remission with 4-6 cycles of chemotherapy ahead to ensure all microscopic cancer cells are gone. She no longer requires the use of a wheelchair or walker, can walk up and down stairs, and returned to school full time as a 6th grader on Long Island.
Learn more about Children’s Specialized Hospital Acute Inpatient Rehabilitation.