For two-year-old Langley toddler Alyssa Kovacic, the trip to BC Children’s Hospital in Vancouver for her surgery on April 3rd was a visit to a place she has become all too familiar with, her family said.
She was excited about the popsicle she was promised after waking up, and happy her parents were bringing a suitcase “as if we were going on a tropical vacation,” they reported in an online posting.
Her operation, to remove a tumour from behind one eye, took 10 hours.
Dan Kovacic, her dad, said it was a very long wait before they heard Alyssa had made it through the operation.
“They [a medical staffer] said, ‘we’re putting her back together,” he recalled.
After the operation, Alyssa woke up a couple of times and cried in pain, but managed to get back to sleep.
She is at home now.
While the surgical team did their best to preserve Alyssa’s eye, she is still expected to need a prosthetic, Dad told the Langley Advance Times.
“Right now, she can’t open up her eyelid.”
In June, Alyssa is scheduled to return to hospital for an Magnetic Resonance Imaging (MRI) scan of her other tumour.
It has been stable, but it is a “daily worry,” Dan said.
That’s because it is pressing on her her hypothalamus, the part of the brain that has a vital role in controlling many bodily functions and behaviours.
As a result, Alyssa has developed Obsessive-Compulsive-Disorder, and “sometimes gets upset” her mother, Angela Lebolo Kovacic, explained.
She is usually in good spirits, but even a minor change can create “panic and fear” for Alyssa, Mom described.
Since Alyssa was first diagnosed with neurofibromatosis, she has undergone chemotherapy and so many MRI scans that her mother has lost count.
Less than a year ago, after Alyssa developed pain in one eye, doctors discovered she had two rapidly growing brain tumors, one in her right optic nerve and another one on her optic nerve, behind one eye.
Alyssa underwent chemotherapy, but it couldn’t save the vision in her eye.
Friends have set up an online Gofundme campaign “Support Alyssa’s fight with NF1 neurofibromatosis” which has so far raised $11,644 towards a $30,000 goal.
It will help pay for a prosthetic eye, which will need to be replaced every three to five years, and other costs that are not covered by ordinary health insurance, such as income lost because Angela had to quit working full-time to look after Alyssa.
There is no cure, the online campaign notes.
It goes on to say that Alyssa “is a determined little girl that proves daily that she has the strength, resilience and power to overcome this barrier [but] her condition remains unpredictable.”