When Tiffani Erulkeroglu’s 7-year-old son woke her up on Mother’s Day in 2015, she didn’t expect it would turn into months of anxiously searching for a cure for her child.
Her son Emre was acting far from normal, saying he had a bad headache.
“Within minutes he was lying in a drowsy state on the sofa but was screaming in pain every time he vomited,” Erulkeroglu said.
By the time they got him to the hospital, Emre was no longer vomiting, and doctors thought perhaps he just had a migraine. There was no evidence to the contrary, so the family went home.
Still, the sudden and horrifying illness Emre seemed to be struck with that morning raised red flags for Erulkeroglu. Following her instincts, she did some research and came across HeadSmart, an awareness campaign that listed symptoms similar to Emre’s as warning signs of a brain tumor.
Fearing it could possibly be true, Erulkeroglu went back to the doctor and demanded more tests. Emre then had a neurological exam, but it showed nothing out of the ordinary.
One doctor pulled her aside and said perhaps she should stop asking Emre whether he had a headache every day, because it may be having the wrong effect—and thus causing the impressionable young boy to think he had one when he didn’t before.
“So I relaxed slightly thinking I was making him worse and that it could be migraines,” Erulkeroglu said.
But several weeks later, Emre was playing with his toys and drew a picture of himself on an Etch-a-Sketch.
Erulkeroglu was startled by the depiction and asked what it meant.
Then Emre pointed to the black dot on his forehead, and said it was “the headache that never went away.”
Erulkeroglu immediately demanded an MRI for Emre—which they hadn’t done before, since there had been a four-month waiting list, and Emre’s case wasn’t then considered urgent.
But they still needed to wait a few weeks until the scan—and the wait was painful. Emre would have fits for hours, in pain and angry about it, and Erulkeroglu started calling the MRI department every day in case there was a cancellation.
After they finally got the scan, results revealed that Emre had a cyst in his pineal glad, although at first they didn’t think it was the cause of his headaches and suffering.
But then when they got home, Emre started vomiting—and then it continued every day, and along with the headaches he was also frequently getting sleepy and his health was deteriorating.
This prompted Erulkeroglu to seek more medical help, after which they found that the cyst was a tumor that they could not operate on. But there were other things doctors could do to help. Emre then underwent procedures such as a lumbar puncture and is now under watch.
“It took three months of me pleading to get a diagnosis but he’s here, stable and getting on with life.”
Erulkeroglu doesn’t want this difficult, drawn-out process to be the norm, as no parent or child should have to suffer through it. Working with healthcare professionals and advocates, she is trying to further awareness campaigns.
“We know from our own experience how important it is for doctors and parents to recognize when a child might have a brain tumor,” she said.
According to HeadSmart, the campaign Erulkeroglu first came across, there are eight main signs to watch for, and three additional ones.
These include anything from the persistent headaches and vomiting that Emre experienced, to fits and seizures, balance and coordination problems, or abnormal head positions.
The signs are also different for babies, children, and teenagers, which can be found here.