Aubrey's Fight Against Ependymoma

During a middle school volleyball practice last September, Aubrey fractured her right femur. As her condition continued to deteriorate, Aubrey's parents, Meghann and Joe, brought her to Maria Fareri Children's Hospital for a CT scan which revealed several tumors on her spine. A subsequent biopsy confirmed that Aubrey had ependymoma, a rare form of cancer that affects the central nervous system; the spinal cord in Aubrey's case. 

After complicated surgery to remove the tumors, Aubrey was admitted to Blythedale Children's Hospital for comprehensive cancer rehabilitation. Blythedale is the only specialty children’s hospital in New York State with the capability of providing the highest level of medical care and rehabilitation for children recovering from complex medical conditions, including childhood cancers. Aubrey needed a customized therapeutic regimen to enable her to regain her strength and function while undergoing radiation therapy. 

Although frightened of the unknown, Aubrey and her family chose to stay positive. 

"The second we sat down and discussed it, Aubrey just said, 'I guess I'll just slay while these cells decay,'" said Aubrey's mom, Meghann.

Aubrey worked daily in therapies with both Tara Sullivan, OT, Lead Occupational Therapist, and Bob Radomski, PT, Senior Physical Therapist. The tumors in her spine were causing weakness and decreased sensation in her body and as a result, Aubrey lost the ability to move or even walk 

"When Aubrey came here, she was very fearful," said Tara Sullivan. "Because she was a kid who was playing volleyball and a typical teenager who lost that function of being able to move her body, now she is saying, 'what do I do with this new body?'" 

Sullivan and Radomski worked together with Aubrey to maximize her therapies. While Radomski focused on the larger movements, Sullivan focused on Aubrey's fine motor movements and her self-care skills, including brushing her hair and taking care of herself. 

"They get who Aubrey is," said Meghann. "They don't see a patient, they see who she is; they see her." 

Both the family and her therapists remember the momentous day that Aubrey was able to wiggle her toe in March, with Meghann recalling how it felt "to see someone cry or be so excited when a toe moves the way that we did." 

"We get excited because she gets excited when she's able to do something different," said Bob Radomski. "As therapists, this is what we live for; to have somebody be able to continue to make this progress." 

Once the radiation treatments were completed, Aubrey's family felt that they were able to take full advantage of everything the Hospital had to offer. One of those areas was Child Life.

"My role at Blythedale is to help Aubrey cope with the stress of being in the hospital," said Lesley Phillips, MEd, CCLS. "Aubrey enjoys painting and drawing and so we use art in many of our sessions to help her." 

Thoughout this journey, Aubrey has been cheered on by #AubreysArmy. Family and friends have rallied around Aubrey and her family through social media to help them get through this difficult time. Aubrey's friends, the Core Four, as well as many others, have visited Aubrey during her hospital stay and have celebrated her 13th birthday, made facemasks, decorated Christmas cookies, and joined her for National Ependymoma Day on May 5. 

With the help of Phillips and the Therapeutic Recreation team, Aubrey arranged to have crafts available for all Blythedale's patients. The symbol for ependymoma is the butterfly so Aubrey asked for butterfly crafts that any patient in the Hospital could make. Her friends and family also came and took turns visiting with her during this special day. 

"Aubrey's family is so supportive," said Phillips. "It's really been amazing to see the support she has from family and friends." 

Aubrey is now looking to the next step where she will transition from Blythedale's inpatient hospital to The Robert Stone Day Hospital. This specialty outpatient program is for children who can live at home, but still require a level of medical and/or rehabilitative care that cannot be met by their school or a community outpatient program. Aubrey will continue with her therapies so that she can continue to maximize all of the progress that she can possibly make while going to school at the on-site school Mt. Pleasant Blythedale Union Free School District. For Aubrey - who missed much of seventh grade - this is crucial.  

"I don't think anybody knows what a gem this is," said Meghann. "To see how much your kids are cared for here; you don't realize that a place like this exists."