By Jasmine Touton
Frank McGowan of Danbury, Conn. sat with his 4-year-old son on his lap while teaching him to type his name, Tom, on the computer keyboard. He noticed the boy turned his head to the side to look at the computer monitor, and pointed this out to his wife, Emily McGowan.
She shrugged it off, as did Tom’s pediatrician, but almost as an afterthought the pediatrician said, “Just to allay your fears, I want you to go see a neurologist in town.”
The sideways stare at the computer screen at age 4 was the first indicator that prompted eight years of treatment for the problems surrounding a plum-sized tumor in Tom’s brain, possibly developing since birth. The neurologist visit sent the family straight to the MRI where the McGowans watched their nursery school student disappear into the massive machine and saw the white mass that popped up in Tom’s head on the live x-ray screen. A nurse watching the MRI ran past the parents and out the door. She was crying.
Tom’s body didn’t take well to coming out of anesthesia from that initial MRI. “I had to get all this news: where to go, how to do it, holding on to my little, prying, squirming guy,” says Emily.
Below is Emily’s first-hand account of how she did do it, with some help from staff at the Believe In Tomorrow House at Johns Hopkins. Today, Emily says, the tumor is stable and, possibly, dying.
By Emily McGowan:
Tom was diagnosed with a brain tumor in March 2001, when he was four. The tumor blinded him on the right side of both eyes. He walks with a bit of a limp but he is an enthusiastic artist, enjoys playing video games, and is on the honor roll in seventh grade. His father and I cherish him.
Tom began a regimen of chemotherapy immediately after diagnosis. It was marvelously effective, but after a year’s treatment, an acute allergic reaction prompted a change.
In 2007, the growing tumor spawned a life-threatening cyst. Our only option was to drain the tumor and surgically remove the cyst, but as parents we agonized over the operation’s possibly irreversible consequences. Our biggest fear: Tom would be left sightless. For our son’s future, we needed the best brain surgeon; we turned to Dr. George Jallo of Johns Hopkins.
We arrived at the Believe In Tomorrow Children’s House in the late afternoon, stepped up to the door, and entered a different world. Staff greeted us and instantly became our friends— friends who understood that we were probably overwhelmed and took every measure to make us comfortable.
We were given passes to the National Aquarium and there, as my husband and I watched the dolphins splash, our eyes met, fearful that the dolphin show would be the last thing that Tom would see.
In the early morning hours we left for the hospital, and that afternoon, as Tom slept in the Intensive Care Unit, Frank and I returned to The Children’s House. The staff cheered our son’s successful surgery as though they had known us for ever.
Frank and I alternated between staying at the hospital and The Children’s House, grateful to be moments away from the other. When Tom was released from the hospital, he got his sea legs back at The Children's House, playing pool, watching television with other children, and beating his folks at air hockey. We immensely appreciated the simple acts of making a peanut butter and jelly sandwich, being able to do a load of laundry, and having a place to park the car.
In August 2008 we returned to The Children’s House in a frantic dash to Johns Hopkins after Tom had a seizure. He had a second surgery, and then rested in the comfort of The Children’s House to strengthen for the trek home.
The Children’s House is a blessing to the many other families whose children were ill. I had chats over coffee with a mother whose son had a heart transplant, and sat with a grandmother who clung to my arm and just wanted company. A father of a premature baby, despite his anger and helplessness, turned to me in the elevator and asked with compassion, “How’s Tom?”
Tom's battle with a brain tumor is ongoing. We may have to make the mad dash to Johns Hopkins again, but we'll have the reassurance that at the end of the trip is the architectural delight: The Children's House, and gracious people who make it a haven.