DIXON – There’s a home on Sproul Street in Dixon – one of four attached, two-story condos. The exterior of the first floor is red brick; the second floor is a beige slatted wood.
And inside of this home, on a certain Thursday in September, there’s a mother holding her small daughter, and they’re sitting on the couch – as perfectly normal and sweet as you would find any other mother and any other daughter on any other afternoon in any other home.
It’s a common scene: nap time. And this daughter, this tiny girl, has her hair pulled up in a bow on the top of her head. The mother and daughter are wrapped in a felt blanket in their living room, surrounded by walls and windows, on which are draped curtains and trinkets and photographs and other things from the past. The girl stayed home from school because she wasn’t feeling well, and spent most of her day drawing in her notebook. In one corner of the living room stands a tall grandfather clock, purchased while the mother was stationed in Germany.
But this family isn’t quite as average as it appears.
Meet Lisa Mena and her daughter, Maya Wood.
In 2009, 10 days before her sixth birthday, Maya was diagnosed with stage 4 brain cancer.
Maya, the tiny girl resting on her mother’s chest, is actually about to turn 10. She is blind in her right eye and has severe hearing loss in her right ear, facial palsy, issues with balance, and permanent right-side weakness. Her thin hair tied up in a bow looks that way because of radiation and chemotherapy. In a closet nearby, her mother keeps a Ziploc bag full of the long, thick, braided locks she had to cut from her daughter’s head before treatment began.
This winter, they hope for a wig from Locks of Love.
Lisa’s son, Alex Wood, is upstairs playing Minecraft. A kind and highly intelligent boy, Alex, 12, is autistic with attention-deficit hyperactivity disorder.
The small but warm home they live in is part of a low-income housing development on the northwest side of Dixon near a park. The family subsists entirely on child support payments from the children’s father, who lives in Colorado, and Social Security Income payments. They get $100 a month in food stamps.
Since Maya got sick, Lisa has been unable to work. The constant medical appointments, surgeries, and trips to the hospital make it impossible for her to be able to agree to a regular schedule. The only time she does have available is while the kids are in school. Maya is enrolled in the third grade at Lincoln Elementary School, though she should be in fourth – the constant barrage of surgeries, treatment and recovery caused her to lose a year of schooling.
“She always asks when the cancer’s going to go away,” Lisa says.
It’s a question that Lisa can’t answer.
At one point during her treatment, Maya underwent six surgeries in 32 days.
She has been airlifted to Chicago four times – twice each from CGH Medical Center and KSB Hospital.
Lisa says that the total cost of the surgeries so far is in the millions, and she can’t afford to pay for any of it.
“It just goes to collections,” she says of her share.
Sauk Valley Media wrote about Maya’s battle with cancer 2 years ago, and a subsequent benefit for the family raised about $2,500. But since then, little has changed.
Maya is in what Lisa describes as the “watch-and-see phase” now. It’s considered a maintenance period that involves scans every 3 to 6 months and blood draws and check-ups with the doctors – sometimes as many as six in a month – in Chicago. Lisa drives both ways in a car she describes as “on its last legs.”
Doctors won’t typically label a patient as being in remission until 5 years after treatment begins, Lisa says. Maya still has 2 to go.
Maya still struggles with day-to-day tasks. After her surgeries and treatment, she had to relearn everything: the once-right-handed little girl became left-handed. She had to relearn how to speak, how to use the bathroom, how to tie her shoes. She can now dress herself but wears diapers every day, and speech is something she still struggles with.
She can’t get around without a walker or a wheelchair. She can’t take the school bus anymore because it would knock her around too much, which means that Lisa has to lift her and her equipment in and out of her SUV every day, twice a day.
Lisa hopes to buy a wheelchair-accessible minivan. But it’s an expensive dream that she acknowledges is far out of her financial reach.
Maya lies on the couch next to her mother, drawing in her sketchbook, mostly ignoring the two strangers with a camera and a notepad who have entered her home. Her pet cat, Taffy, peeks her head out from beneath the couch and ambles over to the stairway.
Lisa looks off into the distance before turning back, an all-but-defeated look in her eye.
She looks at her daughter, and looks back again.
“Every day is a battle,” she says.
September is Childhood Cancer Awareness Month.
Anyone interested in helping Maya's family to fund a wheelchair-accessible van, or with mounting medical costs, can make donations to the Maya E. Wood Account at any Midland States Bank location.