Family faces two brain tumors
Within a week of each other, two of Diane Fragnito's kids were diagnosed with brain tumors.
In 2010, her son, Anthony, now 16, was dealing with headaches and fevers from Lyme disease. During the course of treatment, doctors discovered a brain tumor on his pituitary gland, said Fragnito, a Whitehall resident and owner of Fragnito's Place in Coplay
Describing the tumor as "common," doctors recommended an MRI to make sure the tumor was not interfering with the gland.
At the same time, her daughter, Christina, now 17, was also dealing with headaches.
"She'd come home every day and go to bed," said Fragnito. "The doctor thought it was classic migraines."
Finally, that September, doctors suggested Christina have an MRI as well. Fragnito scheduled both hers and Anthony's for the same Wednesday evening.
After the MRIs, when she was told Christina had a brain tumor, Fragnito thought someone confused the results from her two children.
"'You mean Anthony,'" she remembers saying in response to the phrase "brain tumor."
No, she was told. Christina also had a brain tumor. Located near the brain stem, her tumor was much more serious than her brother's.
"I was a basket case. I couldn't get through the day without crying," Fragnito said.
Christina was admitted to the hospital. A subsequent surgery was unsuccessful, however. After finding the tumor to be too hard and calcified to remove, doctors pulled out for fear or causing more damage.
In January 2011, Christina went to Pittsburgh for a procedure called "gamma knife" in which an intense beam of radiation is used to break up the tumor. In most cases, this allows the tumor to be reabsorbed into the body.
"If it were anywhere else in her head, that's what would have happened," Fragnito said.
Because her tumor was so close to her brain stem, however, the gamma knife procedure caused brain swelling and seizures.
To treat the swelling, doctors put Christina on "ungodly amounts of steroids," Fragnito said. This caused weight gain, ulcers, digestive issues and skin irritation, among other things.
In November 2011, Christina begged her doctors to take her off the steroids. They did, but it caused more swelling. Christina required another surgery.
"They didn't want to go back in again but they were forced to," Fragnito said.
Fortunately, the gamma knife procedure did change the consistency of the tumor, so surgeons were able to remove 95 percent of it.
"The second surgery was a tough one," Fragnito said. It left Christina paralyzed on the right side. Doctors did not expect the paralysis to be permanent.
"In the beginning she was making tremendous progress," Fragnito said. "But now she's pretty much at a standstill ... so, I think she's about as good as she's going to get."
Although she's a "hemiplegic," or paralyzed on one side, Christina can walk using a cane.
She lost about half of her vision and the ability to move her eyes to look up and down. She also developed kidney stones, caused by medication for seizures.
Recently, she developed a tremor in her right arm, severe enough to interfere with her ability to use her hand.
"She lost all the progress she made," said Fragnito.
The tremor can be treated with muscle relaxers but these drugs leave Christina feeling "doped up," her mother said.
"Ever since the surgery, it's just been complication after complication and it's all because of the steroids," Fragnito said. "Your brain wasn't meant to be opened up and put back together."
The one bright spot has been Good Shepherd Rehabilitation. After Christina's first surgery, the pediatric unit evaluated her. After the second surgery, she was an inpatient for seven weeks. She continues physical, speech, vision and occupational therap there.
"The vision therapy is wonderful that they do out at Good Shepherd," said Fragnito. "She's getting movement back in her left eye."
Thankfully, Fragnito said, Anthony's brain tumor remains asymptomatic and he does not require further treatment. He continus to have MRIs to monitor his condition.