Family’s Love Gives Hope To Boy With Brain Tumor
By Nealy Kehres // March 31, 2013
Marathon Struggle To Restore Child's Health
BREVARD COUNTY • MELBOURNE, FLORIDA – When Marielle Bozza’s son, Isaiah, began experiencing frequent headaches, his pediatrician suspected they were because of allergies. Bozza never expected it was the first indication of her son’s potentially lifelong battle against a brain tumor.
Bozza’s concern started when her son, Isaiah Bozza-Cochrane, was just 8. After his pediatrician told her there was nothing to fret about, Bozza was relieved and hoped her son’s headaches would subside.
However, Isaiah later failed a vision test at school, which prompted his mother Bozza to seek advice further.
“It took about two years of going from doctor to doctor trying to figure out what his problem was,” Bozza said. They assumed it was because of ear infections, allergies or a need for glasses. “We just never knew what was wrong with him.”
Finally, an eye doctor noticed that Isaiah’s optic nerve was cloudy, so they performed a scan that revealed a mass on Isaiah’s brain.
The Bozzas’ continuous quest to uncover what was wrong with Isaiah finally ended, but their journey to health had just begun.
“Originally, we thought he would just need one surgery, and he would be done with it,” Bozza said. Fourteen surgeries and 32 rounds of radiation later, Bozza realized she was terribly wrong. “Little did we know, it would be a long road. We still have a long road.”
When specialists discovered craniopharygioma, a brain tumor that develops between the pituitary gland and the optic nerve, they planned to remove the majority of it in one surgery.
However, because part of the tumor is on Isaiah’s optic nerve, removing the mass entirely would have caused him to go blind.
Radiation was a potential therapy for Isaiah’s illness, but after numerous rounds, the tumor repeatedly returned.
Isaiah continued to endure countless treatments and surgeries to no avail.
After a year and a half, the tumor was as large as it was when Isaiah was diagnosed.
Doctors established that although Isaiah’s type of tumor typically grows slowly, this tumor grew fast, which is what makes his condition challenging to cure.
Bozza concluded that this could be a burden that Isaiah will deal with for the rest of his life.
“All of his hormones have shut down, and he will be on hormone replacement for the rest of his life. We didn’t realize this would be something he has to deal with forever,” Bozza said.
Now, Isaiah is 14-years-old, and he and his mother continue to experience the everyday struggles his illness poses.
Isaiah is treated primarily at Arnold Palmer Children’s Hospital in Orlando, which is particularly difficult for the Melbourne residents.
“In an average week, we are travelling back and forth from Orlando at least two times,” Bozza said.
The Bozzas’ schedule is very unpredictable because at any time, Isaiah’s doctor could call him in for an MRI, lab work or another test.
Besides the doctor’s needs, Isaiah is often rushed to the hospital when he unexpectedly feels sick or off-balance.
“In that case, we never know if he is going to be admitted or not, or if he will have to have surgery,” Bozza said.
Bozza is unable to work because her availability is extremely limited by Isaiah’s illness and she never knows when they will have to spend time in Orlando.
However, the most difficult part of her frequent travels is leaving her youngest son, Jaiyden.
“Jaiyden was 4 when Isaiah was diagnosed, so he doesn’t know it any other way,” Bozza said. “It is really hard being away from him all the time.”
Isaiah often misses school at Our Lady of Lourdes Catholic School in Melbourne to travel to Orlando.
“The hardest part has been having to make up all the school work,” Isaiah said. “I don’t get to hang out with my friends a lot.”
Most of Isaiah’s friends do not understand his illness because he doesn’t show visible signs, Bozza said, and Isaiah is a bit hesitant to explain it to them.
“A lot of times, he doesn’t really want to talk about his brain tumor, and sometimes, that is all his friends want to talk about,” Bozza said.
Isaiah is an avid basketball player. As a member of the city’s and his school’s youth basketball teams, he spends a lot of time on the court.
The Orlando Magic basketball team reached out to Isaiah and his family after his diagnosis.
“The Orlando Magic has done a lot of things for Isaiah,” Bozza said. “They sponsor us and did a fundraiser for him. They call us almost every week just to see how Isaiah is doing and offer Isaiah tickets to a game.”
Isaiah’s favorite player is Nick Anderson, who visited him at the Ronald McDonald House while he was there.
The Orlando Magic is not the only organization that support the Bozzas.
The Make A Wish Foundation contacted them in 2009 and sent the family on a Disney Cruise to the Bahamas, which Isaiah really enjoyed.
Also, the Bozzas’ parish, Our Lady of Grace, assists with Christmas gifts during the holidays.
The family is especially thankful to the Candlelighters of Brevard for its Angel Car Care Program. On their countless trips to Orlando, Bozza’s car had several complications including flat tires and engine malfunctions.
The Candlelighters have always there to aid them with their car trouble and fix whatever is necessary to get them back on the road to help Isaiah.
“There are so many families like myself that travel back and forth to Orlando all the time,” Bozza said. “Candlelighters tries to help us all out the best they can. They are an amazing organization.”
However, the Bozzas hope to end their countless trips to Arnold Palmer Children’s Hospital. Recently, Isaiah’s tumor has grown at a slower rate.
Bozza is not scheduling any surgeries until after another scan on Isaiah’s brain in a few weeks.
“It’s a good sign that hopefully things are slowing down,” Bozza said.
Doctors are considering many options for Isaiah. One possibility is interferon therapy, which involves weekly injections for two years.
Once, doctors considered the chromic phosphate P 32 injection route, which would include a series of medicines injected in his brain. However, they ruled it out because it is too toxic for Isaiah.
“The ultimate goal is to stop doing so many surgeries on him because the overwhelming number of them are having negative effects on him,” Bozza said.
Regardless what direction they choose, the Bozzas know they have a profound journey ahead.
“When Isaiah was first diagnosed, the doctor told us that his illness is like an epic novel,” Bozza said, “and his first surgery was only the first chapter of the story.”
The Orlando Magic are conducting a special fundraiser April 13 at the game against the Boston Celtics with special seating and pricing to helping assist with Isaiah’s treatment.
For information, visit https://www.facebook.com/events/173665852785943/?fref=ts
Thank you so much Nealy and Ed for this article it is amazing. I love how it turned out. My family is truly blessed by this.
If anyone is interested in going to the game here is the information.
FOR TICKETS TO Magic v. Celtics Game
1. Follow link: https://oss.ticketmaster.com/html/go.htmI?l=EN&t=magic&o=9942870&g=1438
2. Click FIND TICKETS
3. Enter the Special Offer code “Magic”
4. Create a ticket Master Account (located at the right side of the screen), unless you already have an account.
5. Select the number of tickets & price level you would like to purchase.