Previously in "Curiouser" (Sept. 19, 2007): Anna and Andy Neborak talked about what it was like to be part of a longtime married couple
They were curious about: What it's like to live with an illness
"I thought Make-A-Wish was only for terminally ill kids," says Mark Frangione, 17, of Oldsmar. But when he contacted the Make-A-Wish Foundation in February, his year-plus-long struggle with Ewing's Sarcoma — the second most common malignant bone tumor in children between 10 to 20 according to the Ewing's Research Foundation — made him eligible. Mark's wish was to throw the opening pitch at Yankee Stadium, and although Make-a-Wish couldn't grant exactly that, he and his family did get an all-expense-paid trip to New York last month to see a game and meet 11 of the players.
In January 2006, when he was a junior at Eastlake High in Tarpon Springs, Mark started feeling a pain in his tailbone. Doctors dismissed it for months, then after a test, declared it a cyst. He had surgery to remove it over the summer and was told the pain would soon subside. But by the start of his senior year, it was getting worse. In the fall, an MRI revealed a tumor. For the first time Mark was really scared, even more so when his surgeon determined it to be malignant.
Mark's oncologist reassured him that the tumor would be treatable and beatable. "He was really confident, optimistic. He was very encouraging from the start and introduced me to one of his patients, who finished [chemo]. He's going to do the Iron Man in Hawaii."
Mark's senior picture, taken months before his first chemo, shows him smiling wide with shaggy, thick dark brown locks. Following his first round of chemo, in December '06, he lost his hair. He found unexpected company, however: four of his friends, all members of the school orchestra like himself, showed up one day with their heads shaved, too. "I'm thankful to my friends and family. You really find out how much they care about you."
Mark has played the euphonium, a brass instrument that's "kinda like a trombone, but not quite as bright," since sixth grade. He's in the marching band as well as the orchestra, and shared his friends' dreams of someday playing with the Drum Corps, an exclusive youth program whose participants travel the country performing in summer music competitions. But when it came time to audition a year ago, his illness prevented it.
"The worst part of all this is not being able to do what you used to do," Mark says. He didn't miss prom or graduation, but chemo led to unavoidable disruptions. Before the treatments, he'd been able to keep up his attendance at school, taking off a day here and there when the pain kept him up the night before. But by the end of the spring semester, he had missed about 40 days of school. Chemo forced him to trade AP history for a less demanding class — beginner's band, despite the fact he was also concurrently in advanced band. "Once my teachers found out [about the chemo], they said they'd work around it. They were all really understanding."
This fall semester also passed him by as the rest of his friends went off to college. Mark had originally applied to UF before his chemo started, and was accepted to start in summer 2007. But enrollment had to be put off indefinitely.
The surgery to remove the tumor earlier this summer has limited his mobility and sapped his energy. He takes meds daily for pain and nausea. His mom gives him shots to boost his white blood cells, which has a side effect of bone pain that only a Tylenol-Aleve cocktail can stave off.
His focus now is on getting better. Mark has returned to his old high school as a band instructor several days during the week, but he "mostly hangs out at home, filling out applications for the spring semester. Kind of a boring life," he says. But he's happy with what he's got and knows the road only gets better from here.
He says his chemo should be completed by Thanksgiving, and since he'll still have to stick around the area to go to Moffitt for checkups and scans, he's decided to go to USF; he begins in January. "I have to be strong for the spring. The first semester is stressful enough."
And he's got something else to keep him going: Tryouts are coming up again for the Drum Corps, and he wants to audition for the Rockford, Ill.-based Phantom Regiment. He's always admired their style, blasting powerful and smooth classical music from the playing field.
Since his surgery, he hasn't been able to do anything physically strenuous and has not been able to practice as much as he used to.
But he's "been working on it. We'll see what happens."
Who Mark is curious about: One way he's changed since getting cancer is that he's gotten reconnected with his religious faith. "Being consistently ill made me more in touch with God. I did a lot more praying." Raised Catholic, Mark is curious about what it's like to be a priest. He also wants to know, once someone's suffered a serious injury, what it's like to be in recovery.