Inner Vision

Jacob Simons’ days shimmer with the bright colors and perpetual motion of childhood. Pedaling a shiny red bike through his suburban neighborhood, he grins with delight as the breeze caresses his face. Sometimes he vaults toward the heavens on his trampoline or motors around the yard on a green, battery-powered tractor. Occasionally he tests his coordination—and his mother’s nerves—by hopping on a silver and purple pogo stick. But the first-grader is happiest when he’s headed for the ballpark, dressed in the sky-blue uniform of the Marlins, his T-ball team.

“Blue is my favorite color,” he says.

That observation might seem peculiar, coming from a boy who lost his sight four years ago. But though cancer ravaged Jacob’s eyes, it could not claim his spirit.

And as his friends, family and teammates can attest, Jacob Simons has a gift for instilling others with a new depth of vision.

“The hilltop hour would not be half so wonderful if there were no dark valleys to traverse.” –Helen Keller

One autumn evening in 1998, Jessica Wickel knelt by the bathtub, drying her toddler’s wet body. Gazing into his eyes, she noticed an unusual glare. As she changed his diaper, she again glimpsed a shadow within his pupil. The next day a pediatrician examined Jacob and suggested that he go to St. Jude Children’s Research Hospital.

“The doctor never told me that it was cancer,” Jessica says. “But I knew exactly what St. Jude was, because I’d done a Math-a-Thon when I was in school. Then it hit me: ‘He’s got cancer!’

“And so I passed out in the doctor’s office.”

Jacob had retinoblastoma—a malignant tumor of the retina—in both eyes. At St. Jude, Jessica and Jacob met Barrett Haik, MD, chief of the St. Jude Ophthalmology division, who put the family at ease.

“I thank God for Dr. Haik every day,” says Jessica. “He’s a doctor who will sit down and talk on your level. And he’ll actually sit there and cry with you. He cares just as much for these kids as their own parents do.”

Haik, the late Charles Pratt, MD; Carlos Rodriguez-Galindo, MD; and Matt Wilson, MD, led the team that treated Jacob. 

“I’ve been doing this for about 25 years, and Jacob’s was one of the most aggressive cases that I’ve seen,” says Haik. The doctors used chemotherapy, radiation therapy, lasers, freezing treatments and radioactive implants. Nothing seemed to work.

“It was like the tumor cells were immortal,” Haik recalls. Fearing that the cancer might spread to Jacob’s brain, Haik removed the boy’s right eye in November of 1999, the left eye 14 months later.

Jessica says she will never forget the day when Haik told her he needed to remove Jacob’s other eye. “He came out of the operating room and told me, ‘If I don’t take his eye out, I’m going to risk his life.’”

Through her tears, Jessica replied, “I’d rather have my son here and blind than not have him at all. He’s there in the operating room; you know what you have to do. Go save my child.”

Jacob recovered quickly, but his mom mourned for him. “Everything that he would never be able to do just flashed before my eyes,” she says, her voice cracking with emotion. “He would never see his little brother, Kaleb, again. He would never be able to play baseball or do other things that he enjoyed. And he would never see what his mommy looked like again.”

“Did you hear me hit the ball?”  –Jacob Simons

In April of 2003, Jessica discussed Jacob’s experiences on the air during a St. Jude radiothon on WKSJ 95.1. Electrician Buddy Young was listening.

“I was trying to work with tears just rolling down my face,” Young says. “At the end of Jessica’s story, she said she regretted that she’d never get to see Jacob play baseball.”

That comment haunted Young, a T-ball coach. “I’m not a real emotional guy,” he says, “but all I thought about for three days was Jacob’s story. I didn’t see any reason why he couldn’t play ball.”

When Young invited Jacob to join his team, Jessica was thrilled but skeptical. “How exactly is Jacob going to do this?” she asked.

“You don’t worry about anything. You just bring him,” Young responded.

Because Jacob joined the team mid-season, he was unable to attend practice before his first game. When he arrived at the ballpark, “Coach Buddy” explained how the game would work: After hitting the ball off the tee, Jacob would hold a coach’s hand to run the bases. When the Marlins were outfield, Jacob would serve as catcher; a teammate would catch the ball and give it to Jacob, who would then hand it to the umpire.

“His very first game, he hit the ball and ran to first base with a big smile on his face,” Jessica says. “I cried so hard, because I was watching my child do something that I never thought I would see him do.”

A couple of weeks later, Jacob made his mommy cry again.

The bases were loaded when Jacob came up to bat. He hit the ball so far that he knocked all the runners home. As he sprinted for first base, Jessica went ballistic. “I was screaming; I was jumping up and down; I was on the fence,” she says. “It was just amazing. Even the opposing team was hollering for Jacob."

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.” –Helen Keller

Children play T-ball, but adults take it seriously. At many games, parents and coaches yell strident commands, dispute calls and engage in verbal brawls. Jacob changed all that, bringing clarity to those blinded by rivalry.

“When Jacob got his first hit in his first real game, both sides stood up and clapped and screamed, and all the competition went out,” Young says. “Nobody was worried about winning or losing after that; not just in games that involved us, but in all 12 teams in our league.”

When Jacob joined the Marlins, a coach told Jessica that team pictures were scheduled for later that week. “After the pictures were over, I found out that they had already had their team pictures made,” she says. “But Jacob was a part of the team now, and so they had rescheduled their photo to have him in it.”

Then cancer struck again. “Coach Buddy” discovered that his son, Brady, had leukemia. While Brady was undergoing chemotherapy, Young continued coaching the Marlins. Jessica ponders the irony of the situation. “Did God bring us together?” she muses. Today, Brady’s disease is in remission, and Young looks forward to coaching both Brady and Jacob this summer.

Last year, Young’s baseball league created an annual award for the player who exhibits the best attitude and the most courage and love for the game. Jacob was the first recipient of this honor, which has been named the Jacob Simons Heart Award.

TV crews and journalists have chronicled Jacob’s exploits. Jessica even received a phone call from the Florida governor’s office asking for her address. Jeb Bush wanted to write Jacob a letter. “I was sorry to learn that you have lost both of your eyes to cancer,” Bush wrote. “I do not think that will stand in the way of your dreams and plans.”

 “I can see everything!” –Jacob Simons

Jacob is an independent and confident 7-year-old. “I don’t need that stick,” he said, when presented with a cane. “I don’t have to learn these dots,” he pronounced, when encouraged to learn Braille. Jacob finally agreed to study Braille, but still disdains the cane.

To avoid curbs and obstacles when riding a bicycle, Jacob listens carefully to his mom’s verbal directions. In addition to having a keen sense of balance, an inquisitive nature and a healthy dose of courage, he is also observant.

“Jacob knows the voices of the people he knows and cares about,” says Mindy Lipson, RN, a certified nurse practitioner in St. Jude Hematology-Oncology. “He’s very brave, perceptive and pretty amazing.”

One day, when riding in the car, Jacob commented, “Look, Mommy, there’s Burger King.” Jessica did a double-take. Sure enough, Jacob had correctly distinguished the brand of hamburger by the scent.

“You never hear Jacob talk about how he can’t see,” Jessica says. “To be honest, he thinks he can see.”

Jacob can dribble a basketball, ride a scooter, jump on a trampoline, play video games and drive battery-operated vehicles. Currently, he is anticipating a ski trip, a horseback riding weekend and golf lessons.

“Jacob’s really smart and has a good memory, but he does things that I can’t explain scientifically,” Haik says. “He seems almost to have another perception that allows him to judge distance and space. “I know he doesn’t have eyes, but God bless him, I’m glad he can see. I just don’t know how he does it.”

“We live by faith and not by sight.”  –2 Corinthians 5:7

Jessica says that her experiences with Jacob have opened her eyes to the nuances of gratitude.

“When Jacob lost his last eye, I was very angry with God,” she admits. “I said, ‘God, all this praying that I’ve done, and you haven’t even listened to me.’”

At night, Jessica would lie in bed and cry. “Why, God?” she railed. “This isn’t fair!”

But then Jacob came and sat by her. “Mommy,” he said, “I know my eyes were sick, and I know that I can’t see. But it’s okay. Don’t be sad.”

“Now I know that God did listen to me,” Jessica says. “Jacob’s got a great attitude. He’s playing T-ball. He’s happy and he’s healthy and he’s alive. God’s not letting Jacob suffer.

“So every day I say, ‘Thank you, God.’ Every day. And I know that He listened to me.”

“Please, dear lord, I always pray that you’ll keep me cancer free for the rest of my life and let me live to be a hundred.”  –Jacob Simons’ bedtime prayer

Reprinted from Promise magazine, spring 2004.

 

If you would like to comment on this article, click here.