Michaela's story 

See Michaela's 2009 Miracle Kid video (WTAJ)

Ten-year-old Michaela may have the sweet smile and vibrant exterior that is shared by many kids her age, but don’t let that fool you.  This youngster already has waged a number of battles just to survive – and has proven that inside, she’s tough as nails.

“She was born with a tracheoesophageal fistula, where her esophagus connected into her trachea,” says her mom, Andrea.  The condition, affecting her windpipe and foodpipe, required surgery.

Andrea and her husband, Kirk, never thought that Michaela’s path to victory against that diagnosis would launch an unrelated and even more serious fight.  But at 15 months old, while still undergoing treatment, Michaela was starting to have other symptoms like headaches and blurred vision.  Tests were done, then the phone call came.

Michaela had cancer.

“I dropped the phone and fell to my knees and just cried and cried,” remembers Andrea.

The diagnosis was neurofibromatosis with optic glioma.  Essentially, a number of benign tumors were growing throughout Michaela’s brain, which would cause her some processing difficulties, and on some nerve endings, which could cause her discomfort or pain.  But the second part, the optic glioma, was a cancerous growth that was rapidly expanding.  The treatment included months of chemotherapy – and its side effects.

“She had a foot drop, and we had to go to physical therapy for that,” Andrea remembers.  “And she seemed to be constantly sick with head-cold symptoms.  She was pale-looking and fragile.”

The family had been living in the Pittsburgh area when Michaela’s chemotherapy started, but decided to move closer to family in Mifflin County – and her doctors coordinated with specialists at Geisinger’s Janet Weis Children’s Hospital to take over her care.

“The family was thrilled to have all the care they needed here under one roof – both for the difficulties Michaela was undergoing and then later, for the additional specialists she would need,” says Becky Sneidman, a certified registered nurse practitioner in the oncology department at Janet Weis Children’s Hospital.

Almost impossible to believe, Michaela’s difficulties were, indeed, far from over.  She was diagnosed with hypothyroidism.  The effects of the tracheoesophageal fistula led to a number of surgeries for severe acid reflux.  Then there was an asthma diagnosis.

“It feels like once one thing is conquered, something else arises.  You think things are going to calm down, then something else happens,” Andrea says.

And the hits continued to come a little more than a year ago, as an MRI revealed another growing tumor in the basal ganglia, a section deep within the brain.  A second round of chemotherapy – once every 28 days for an entire year – was needed to combat that cancer.

“One in about 4,000 people have this genetic disorder, the fibromas, but some have no symptoms or only mild ones,” explains Jagadeesh Ramdas, MD, pediatric oncologist at Janet Weis Children’s Hospital.  “The most important thing with this condition is that it needs to be closely monitored, so if intervention is needed for a growing tumor, it happens earlier rather than later.”

Throughout the chemotherapy, Michaela continued to struggle through the difficulties from the benign tumors as well.

“The chemotherapy works for the gliomas, but there’s not much they can do for the benign tumors other than surgery, if they are in areas they can get to,” Andrea explains.

“Unfortunately, these fibromas can grow virtually anywhere, and they can be painful,” Dr. Ramdas says.

One of the more problematic benign tumors was discovered recently in Michaela’s face, near her cheekbone.  While it wasn’t thought to be cancerous, it was causing her pain and may even wrap around a nerve.  At first, surgery appeared to be one possible option – but more extensive examinations would need to be done.

“We’ve tried to sit down and talk with her about each thing that has come up, like the face tumor,” Andrea says.  “It’s a lot of decision-making for a 10-year-old.”

Michaela now sees about eight different departments through Janet Weis Children’s Hospital, including gastroenterology, oncology, ophthalmology and neurology.  She and her family make the trip from their home one, twice, sometimes even three times a week.

But throughout it all, Michaela has never lost her sense of humor or her flair for entertaining.  This summer, she will once again attend Camp Dost, a specialized summer camp coordinated by the Ronald McDonald House of Danville and partially funded by Children’s Miracle Network at Geisinger.  And despite her penchant for rapping at previous outings, she is planning a new look – complete with slicked-back hair – for her Elvis routine.  Her brother and sisters – Josiah, Sarah and Aunnah – two of whom also have fought neurofibramatosis, will be on hand, too, to cheer her on during the festivities.

“This girl has been through a lot, and yet she just takes everything and goes with it,” Andrea says.  “She’s a tough cookie.”