Teen battles brain tumor with laughter, grit

Catholic Central grad believes God has plan

By Karen Mahoney
Special to your Catholic Herald

BURLINGTON — If he were lucky, he would live six to nine months after they found the tumor in his brain. Two and a half years later, John Van Henkelum is optimistic about his future.

“I have been blessed,” he said.

Blessed.

“I have a lot of faith in God,” he said. “In the back of my mind, I know that God has a plan for me and that really helps me through everything. I find myself turning to him more often, but there are days that are very hard.”

Van Henkelum understands the preciousness of life.

“I don’t get angry,” he said. “I really never did; there are days I have questioned why this is happening, but being angry won’t help at all. It might make me feel better for a minute, but it really won’t help in the long run.”

Van Henkelum, a recent graduate of Catholic Central High School, has offered that message consistently throughout his ordeal: almost from the day the sudden twitching began along the right side of his face, almost from the day his right eye refused to open and close completely and the day when doctors discovered why.

High rate diffuse pontine glioma or brainstem glioma arises in the glial tissue of the brain stem, which controls many vital functions. It is a malignant tumor that accounts for 10-15 percent of all childhood central nervous system tumors.

It is a tumor that is possible to slow, as happened with Van Henkelum, with chemotherapy and radiation treatments in March of 2006, but impossible to stop. Surgery is not an option due to the location of the tumor.

“Even if the cells die, there will still be a mass in there,” he said. “The tumor didn’t have too many side effects for me, but the side effects from the steroids I had to take were awful – (they) made me gain a lot of weight. But, I am feeling good now.”

After the radiation, the size of the tumor diminished, but doctors fall short of saying that Van Henkelum is cured and Van Henkelum pulls no punches with his own sense of mortality.

“They will say that I am better off before I had the treatment, but they have no idea what will happen down the road,” he said. “There is no way to predict what will happen until it actually does. I will continue to get MRI’s every six to 12 months to see what is going on. So far, the cells on the MRI show that the tumor continues to stay less bright than it was before.”

Van Henkelum’s dignity, grit and determination cause other students to appreciate the fact that they can shoot a basketball or play football. Van Henkelum used to be able to do both. A head trauma could be the catalyst that will start the tumor growing again. No matter. He jokes about the things he cannot do and helps others to see the things he can.
Whether it is through odd newspaper headlines, or joking about his cancer, Van Henkelum is brilliant at making others laugh. A budding stand up comedian, he has already participated in two school events.

“I guess you could say that I am fluent in sarcasm and if they offered a college degree in it, I would master that,” he said laughing, “I try to do or say whatever makes me think that others might laugh about. For instance, there was a headline in the paper recently. It said, ‘Cambridge Mayor is going to build plant.’ That was it. It doesn’t say what kind of plant; for all I know he could be building a flower.”

While he enjoys making others laugh, humor is what keeps the Mukwonago teen and member of St. Peter Parish, East Troy, from giving in to depression.

“I realistically think that if I didn’t have a good sense of humor, I would not be here,” he said. “I would have gotten depressed. It is true that laughter is the best medicine … well, laughter and chemo.”

Two and a half years after doctors found his tumor, Van Henkelum remained on track to graduate at the top of his class on June 7.

An honor roll list taped to the glass near the principal’s office includes his name each semester. Despite having to teach himself during the long days away from school while undergoing treatment, Van Henkelum maintained a 3.81 grade point average – enough to earn a couple of scholarships, one for the University of Arizona, the school he plans to attend in the fall.

“Right now I am undecided about what I want to major in – maybe something in history or aerospace engineering,” he said, adding a laugh, “I think my family is worried about me though as they are trying to follow me out there.”

Indeed, Van Henkelum maintains a close relationship with parents Paul and Carol, and brother and sister, Mike and Regina. All have remained sources of support throughout his illness.

“They have all been there for me and have been supportive during everything I have gone through,” he said.

While it may have been easier to hide the tumor in a large public high school, attending the small close knit Catholic Central served as a healing balm as teachers, staff and students not only embraced Van Henkelum but his illness as well.

“Everyone there has been really supportive of me,” he said. “My friends are so great and do whatever they can to keep my spirits up.”

Prior to his first year of college, Van Henkelum will work at Blockbuster Video, play on his computer and hang out with friends.

“I also plan to spend a lot of time out on the lake doing a little waterskiing or wakeboarding,” he said. “I enjoy just being out there on the lake.”