Life before cancer for the Johnsons was filled with vacations together, corny jokes and mundane errands that doubled as family outings. Life after cancer? Thankfully-and miraculously-it’s pretty much the same.
Downers Grove mom Kelly Johnson isn’t one for drama, even when her world is swarming in it. A slender, tall woman with thoughtful eyes, she calmly remembers how she stood alone in an emergency room and heard the news: her son Bobby, then 5, had a brain tumor the size of his fist.
She lets only a solitary tear escape retelling her family’s story.
Few clues
Bobby’s massive tumor was pressing against the part of the brain that controls balance and gross motor skills. Stealth-like, it revealed no hints of its presence until emergency surgery was necessary. “The weekend before [surgery] we were at Waterfall Glen and he was balancing on rocks and going across the creek there,” Kelly remembers. “He shouldn’t have been able to do that. There was nothing showing. There were no headaches, vomiting or anything.”
His face revealed the first clue. Bobby had been in speech therapy, but one day his therapist noticed part of his face appeared droopy. He thought it could be Bell’s Palsy, a facial paralysis sometimes caused by a virus.
The pediatrician also thought it was most likely Bell’s Palsy and expected it to disappear. It didn’t. Alarmed and wanting a second opinion, the Johnsons made an appointment at Children’s Memorial Hospital.
The sinister tumor began to reveal itself the day before the appointment.
Vomiting and a headache kept Bobby home from school. That night, Kelly slept with her hand pressed down on Bobby’s head, to soften his pain. The next morning, she knew he was dehydrated and took him into the emergency room at Good Samaritan Hospital in Downers Grove. She still hoped to keep their appointment with the neurologist.
But plans changed.
Bobby’s neurological responses seemed strange to the ER doctor, who ordered a CT scan. “That’s where they saw the tumors,” Kelly says. “There was the large one … and basically what they call ‘salt and pepper.’ ” The finely dispersed, small tumors ran all the way through his brain and spine.
“Thanksgiving” 2003
What should have been a time of gathering around the table with turkey and the trimmings instead turned into a gathering in the hospital with the Johnson family praying.
Bobby had been sent to Hope Children’s Hospital in Oak Lawn immediately after the ER visit to have his first surgery to remove the large tumor, dubbed the “mother” of the other smaller tumors. “Talk about putting your trust in people that are the experts,” says Kelly, who commends the hospital’s special brain tumor clinic of oncologists, radiologists and surgeons.
Nothing prepared them for the inevitable goodbye to Bobby as he was wheeled off into surgery.
More than ever, Kelly says she relied on her husband Bob for support during those dark times. “Bob is so good at saying [to the hospital staff], ‘This is my child, he’s now your child. I’m placing my child in your hands, take him as you would take your own,’ ” Kelly says quietly.
Lost ground
The changes in Bobby after surgery weren’t immediate. In fact, right after surgery Kelly remembers how Bobby feasted on macaroni and cheese.
Hours later, however, as his brain readjusted to the lack of pressure from the tumor, the consequences of surgery and the unknowns started. “He basically couldn’t sit up, he couldn’t roll over, he couldn’t swallow, he couldn’t talk,” Kelly says. She says the doctors warned her he might not be able to talk, but that he would talk again.
His first word came three months later as they were returning home from the hospital. The word was a loud “No” directed at his younger brother, Liam. Kelly laughs now at how pleased she was to hear the brothers bickering.
While the first surgery was a success, Bobby’s cancer journey was far from over. He endured multiple rounds of radiation and chemotherapy. He had ports inserted to receive medicine more easily, as well as feeding tubes since he couldn’t swallow. One eyelid was stitched down partially to protect his eye, since he couldn’t blink normally. He had ear tubes inserted to relieve sinus congestion.
Kelly rattles off the list nonchalantly.
Bobby also had a second brain surgery, to remove a suspicious-looking tumor. “In some ways it was more scary [than the first surgery], because you’re like, ‘is he not going to be able to talk when he comes out again, are we going to be totally back to zero?’ They don’t have exact answers,” Kelly says.
The tumor was non-cancerous.
While the scans on Bobby’s brain have been clean since October 2004, he continues to work on regaining his speech and gross motor skills. He has occupational, physical and speech therapy sessions weekly and is supported in his second-grade classroom by an aide. Bobby will be taking growth hormones, since the chemotherapy and radiation decimated his pituitary gland’s function.
Although Bobby has changed physically, he hasn’t changed a bit mentally, which was Kelly’s largest concern. “He’s still that stubborn boy with his father’s sense of humor and a sense of liking this and liking that. He’s still Bobby, and that’s probably one of the biggest blessings and biggest concerns answered-that he’s still that little boy that he was,” she says.
Kelly is astonished by Bobby’s determination and is inspired by him. “At the beginning of the school year, I remember thinking ‘I wonder if there will ever be a point where he’ll be able to walk to school,’ ” says Kelly, who pushed him in a jogging stroller back and forth to school in the fall. “Well, he’s running home, with his own little lopsided gait … from school now.”
How did she cope during her family’s ordeal? Kelly dismisses any thoughts of personal courage and is quick to thank others: Family. Friends. God.
Her four sisters and Bob’s three sisters were fixtures at the hospital, alongside her and Bob to watch over Bobby. Bob’s mother cared for Liam.
Friends also provided a source of strength, which frequently came in the form of soup. “We didn’t need meals for at least eight months, it was crazy,” Kelly says. “It was like a little love package from people.”
Kelly also put her trust in God. “You realize how much that we don’t have control,” she says. “There’s something bigger than all of us in this.”
Lessons from cancer
Kelly is a different mother now.
“You can’t come face-to-face with a miracle like this and not be changed,” Kelly says. “I think it teaches you the idea of serving. Surrendering. You really appreciate those moments, those days, those times that you have, because you know that they’re so fragile.”
Does that mean she’s a parent who soaks up every moment with her kids?
She wishes.
“I still get mad at the boys because they’re supposed to be in bed and I’m tired and they’re tired, that’s my meltdown period. And I think, ‘I should be beyond all this, who cares?!’ but, you know, it still happens,” she laughs. “Sometimes the bigger things are easier to deal with than the little things,” she adds, saying colicky babies and temper tantrums can test a parent’s might as much as cancer. “It’s still you there, trying to deal with it.”
The family’s ordeal also has taught Kelly to appreciate her boys more.
“You do appreciate the gift that your children are,” she says. “You also learn to see them as a gift and see their uniqueness, their strengths, their weaknesses, their abilities, as the gifts that they are.”
How to help Each time our family cracks open a soda, it's hard not to think of our neighbor, Bobby Johnson.
He’s an avid collector of pop tabs for the Ronald McDonald House Charities, which recycles the tabs to support its operations. (Since 1987, the charity has collected and recycled more than 400 million pop tabs, generating more than $4 million.)
While the Johnson family didn’t stay at a house, parents Kelly and Bob told their son Bobby, a brain cancer survivor, about the program and how it helps families with sick kids. “It really struck a chord with him,” Kelly says. “He’s been passionate about collecting tabs ever since.”
In fact, he dressed up as a pop tab for Halloween in 2005.
Want to help?
• Pull off tabs from soda cans, vegetable and soup cans and pet food cans. (Tip: move the tab back and forth and it will fall off easily.)
• Drop off tabs wherever you see the cardboard House container (find them at your local McDonald’s, grocery, bank, etc.)
• Spare your spare change to Ronald McDonald House Charities at McDonald’s restaurants (or make a direct donation at www.rmhc.org).
Jill S. Browning lives in Downers Grove with her husband and 6-year-old triplets.
