By Sophia Chang
In Jake's case, that means Blastoise goes into a sterilized bag and accompanies him into operating rooms for the 20-odd surgeries the 5-year-old has had since December, for a brain cyst and subsequent fungal infections and spinal meningitis.
On Thursday, June 10, there will be a benefit hosted by officers from the 111th Police Precinct in Bayside, where Jake's father, John Brower, is an officer. The benefit will be held in East Meadow, L.I. to help Jake and his family with the astronomical medical bills.
Jake started experiencing headaches during bowel movements last year. When the headaches worsened, doctors found a cyst on his brain on the back of the cerebellum.
On Dec. 2, Jake underwent a brain operation at LIJ Schneider's Children's Hospital to fenestrate, or break up, the cyst. His parents brought him home a couple of days later but noticed that he was not recovering normally from the surgery.
Jake was readmitted to Schneider's on Dec. 11, and on Dec. 19, Jake had the first of a series of strokes. In early January, doctors discovered that a fungal infection, invasive asprigillus, had taken over Jake's brain.
Since then the boy has had at least 20 surgeries, according to his father, John Brower. “Many were brain surgeries, to remove the fungal infection and to connect the different parts,” Brower said. “They've entered just about every hemisphere of his brain.”
Jake is different than the boy he was just seven months ago. Then, he was a brown-eyed, brown-haired boy with an impish smile, attending kindergarten at Fairfield Elementary in Massapequa, L.I.
“He was the mayor,” Lisa Brower, his mother, said. “He knew everyone. Adults would knock on the door to play with him. He woke up smiling and went to bed smiling.”
“There was nothing he couldn't do,” she added.
Now Jake has to wear a diaper again; he contracted fungal spinal meningitis and is bedridden; and thanks to a trachea tube, he has not spoken since January. The boy, whom his parents recalled as having a “huge vocabulary,” will be lucky to read again.
Since January, he had been at Blythedale Children's Hospital, a rehabilitation clinic in upstate New York. Brower is hoping to return Jake there soon. “He just needs to be stable so he can go back to rehab and rebuild, as best we can, his overall condition,” he said.
Last week, Jake was back at Schneider's because his sodium levels were low and his heart rate had slowed, and an MRI showed that an abscess caused by the fungal infection was spreading next to his brain stem.
A physical therapist was exercising Jake's legs as he laid in the hospital bed, and Jake tossed his head in protest. Lisa Brower sat by the bed, calming him by blowing bubbles in his face.
“We sleep in chairs next to his bed,” Brower said. “My father-in-law takes care of my daughter, who is 8 years old. We haven't been home since this whole thing started.”
Brower has changed his shifts at the 111th Precinct to spend more time with Jake, and Lisa Brower left her part-time nursing position at North Shore Hospital to tend to her son. The family lives in Massapequa but has taken an apartment near Blythedale as well, in order to stay near Jake.
Brower estimates that Jake's medical bills are in the millions of dollars. “The bills, I don't know how it's going to end up. One bill, just for a hospital room, medication, an MRI and some therapy, was $928,000 for three months,” he said. “Right now the bills are sitting in a box at home. It's like a tornado; we're just trying to sit through the winds.”
He said that even with insurance, his plan only allows for 20 outpatient visits a year, which Jake could exhaust in a month. “He'll have needs for many more visits than that,” Brower said. “After he gets out of Blythedale, he'll need therapy for a long time. There's no doubt that he'll have medical needs for a long time.”
The Police Benevolent Association is hosting a benefit for Jake at 7 p.m. on Thursday, June 10, at Chelsea Street, 1900 Hempstead Turnpike in East Meadow, L.I. For more information, call 516-794-3091.
Despite the difficulties Jake and his family face, Brower believes that his son is tough enough to overcome the diseases.
“In our hearts we truly believe he's got a lot,” Brower said. “With some good rehabilitation and hard work, Jake will be rehabilitated and come home to his friends and family.”
“In January or February the doctors told us he was in such bad shape that we should discontinue medical treatment and take him home. We were praying for miracles,” Brower said. “If we discontinued medical treatment, a miracle isn't possible.
“This is my best friend. He's my little buddy,” Brower said. “We need lots of prayers.”
Reach reporter Sophia Chang by e-mail at news@timesledger.com, or by phone at 718-229-0300, Ext. 146.
