The tumor and the diagnosis where equally frightening for Amy and Jim, as well as for their two other children, 22-year-old Kristyn and 12-year-old Max.
“Imagine getting a bag of baked potatoes,” Amy said. “And there’s that one that’s always bigger than the rest — that was the size of the tumor Will had removed.”
The results showed positive for ganglioneuroblastoma, a rare form of intermediate nerve cancer that affects fewer than five of every 1 million children.
“This type of cancer is usually seen in children under 10 years old,” Amy said. “Will is the only documented 14-year-old in the United States with this cancer. The only one other child Will’s age who was diagnosed with this was in India.”
Recovering from major surgery hasn’t been easy for Will, but neither will the next few months.
“It’s a waiting game now. We don’t know if the cancer has spread,” Amy said. “Right now it’s about going back and forth to hospitals and lots of testing.”
For Will, the days are filled with lots of rest and lots of appointments. He’s had bone scans, nueroblastoma injections, physical therapy for his shoulder and visits to an opthamologist to deal with Horner’s Syndrome.
“It’s a nerve cell cancer,” Amy said. “A nerve that was once connected to the tumor has caused one pupil to be smaller than the other and one eye to open wider than the other.”
Although the whole experience has been difficult for Will, he said he finds “it just kind of annoying.”
“He doesn’t like it when I look at the whole picture and then say, this could happen or that could happen,” Amy said. “He says he doesn’t want to hear that.”
In fact, Will is positive about his experience. On his way to his first CT scan he told his mom something she will never forget.
“I said I trusted God so there’s no need to worry,” Will said.
Amy is proud of that attitude.
“We go to River Oaks Church and Will is a part of the youth group and has been on numerous mission trips,” Amy said. “He’s a very strong believer in God and he has total faith that everything will be OK.”
Will’s younger brother, Max does not yet have as strong a faith.
“He’s been acting out in school a bit,” Amy said. “And at first he kept asking me, ‘Do I have cancer, too?’ He’s been very scared.”