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'We weren't ready for this' Surgery, tumor leave teen unable to walk

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The surgery was supposed to be fast, done in a day and out of the hospital in a week.

Maddie Newton had gone into the hospital to correct a problem with the curvature of her spine. The 14-year-old Franklin girl had resisted getting the procedure done, but her mother had assured her it would be for the best and help her avoid back problems down the line.

“We thought that was going to be all we had to worry about,” said Kim Crouch, Maddie’s mother.

But what started as a short surgery has turned into a four-month battle with cancer and partial paralysis. A tumor found during surgery to correct scoliosis was cutting off the nerves to her lower part of her body. Waiting any longer to remove it would have left her completely paralyzed from the waist down.

Surgery to remove the tumor damaged nerves and left Maddie with little use of the legs. The 14-year-old can no longer move her left leg and can’t feel her right.

The situation has been so abrupt, the family hasn’t had time to really dwell on what’s happened. They’re still in a sense of shock.

“I was expecting a week. Scoliosis and then we were out. We weren’t ready for this,” Crouch said.

Doctors tell the family that she’ll be a “high-functioning paraplegic.” She can wiggle her toes on both legs and can raise one leg slightly off the floor.

But they’ve told her she’ll be dependent on a wheelchair and a walker for the rest of her life. Her legs can’t handle her weight.

In their Franklin home, Maddie is still learning how to maneuver around corners, through doorways and in her bedroom.

“When I clean my room, I have to use my arms to scoot on my butt to put anything away,” she said.

Crouch and her fiancee, Martin Sich, as well as Maddie and her three siblings all moved into a new house just a week before the spinal surgery.

The two-story home isn’t suited for a wheelchair or walker, so the family has had to make adjustments. Maddie’s room is on the first floor. A bar installed in the bathroom helps her transfer into the bathtub.

Currently, they’re looking to build a ramp on the side of the house to help her get in and out.

The one place she’s learned to enjoy is the kitchen.

“The kitchen is my playroom. I go in and do 360s with my wheelchair,” she said.

In a corner of the living room, a plastic file cabinet stores gauze, bandages, catheters and other medical supplies.

Piles of paperwork are stored in binders that the family has put together. Seven doctors have been calling to schedule appointments for everything from radiation treatment to occupational therapy.

A whiteboard set up over the table keeps track of when Maddie needs to take the 10 different drugs she’s been prescribed.

All of this was foreign to the family just a few months ago.

They had discovered that Maddie had scoliosis over the summer, after her mom was tracing her finger around her back. Tests revealed that her spine was severely crooked.

The proposed procedure was intended to correct that sideways curvature, said Dr. William Didelot, her pediatric orthopedist. Metal rods would be implanted along the spine to guide it correctly as she grew older.

But during surgery on Aug. 20 to implant the rods, Didelot started noticing serious problems. A computer sensor indicated that Maddie’s nerves weren’t registering anything on the lower left side of her body.

Didelot suspected the problem may be a growth on her spine. The only way to tell would be to take a magnetic resonance image, and that couldn’t be done with the rods in her spine. So Didelot had to remove the regular metal supports. Titanium versions were put in their place.

Body scans showed a 6-inch tumor just a few inches down from her brain stem inside her spinal column. Doctors diagnosed the tumor as an astrocytoma, a form of brain cancer known for being extremely slow-growing.

The danger is that it will continue to grow, crowding out nerves and eventually destroying various body functions.

The tumor had likely affected the growth of her left leg since birth, Didelot said. She had always noticed that the leg was slightly smaller but always thought it was a quirk.

Surgeons were able to remove 98 percent of the growth and recommended a six-week regiment of radiation to kill the remaining section.

Maddie was in the hospital for 74 days before being released Nov. 2. Surgery led to physical therapy, where Maddie continually suffered setbacks. A mishap during therapy resulted in her surgical wound opening back up, and it later became infected.

Doctors later found a drug-resistant form of staphylococcus infection was raging through her body. She had to be isolated for weeks.

“She’d take a step forward, then 10 back. Every time she seemed to be going in the right direction, something else was going on,” Sich said.

Maddie passed the time by coloring posters and painting piggy banks provided by the nursing staff. A few times, she could leave on a patient excursion to the Circle City Mall downtown Indianapolis, along the downtown canal, or to get her hair and nails done.

“I was on Facebook all the time,” Maddie said.

Once radiation is finished, that should be the end of her cancer treatment. But years of physical therapy remain, Sich said.

The treatment schedule is daunting. But Maddie just keeps focusing on finishing.

“She’s got willpower like you wouldn’t believe. She’s so strong,” Sich said.

Her friends have rallied around her. They’ve made trips to the hospital to see her, and give her a constant stream of texts to keep her updated with what’s going on. When she was released, they stopped over to gossip around the living room table.

Maddie would have been an eighth-grader at Franklin Community Middle School. The entire class signed a homemade card that was presented to her that read “Are you sick of us...” on the front flap, then “...or just sick of school?” on the inside.

She will likely have to be home-schooled and do online classes while receiving her radiation treatments. But her goal is to make it back to regular classes afterwards.

“We want her back,” said Chyann Atwood, who has known Maddie since the two were 6 years old.

Besides the obvious physical and emotional upheaval the family has endured, financial strain is starting to mount.

The family has Medicaid to cover Maddie’s treatment. But other necessities, such as catheters, transportation to her appointments and handicap-accessible additions to the house aren’t covered by the insurance, Crouch said.

Crouch is a store manager for a Circle K in Columbus and is on 24-hour call. She’s taken as much time off as she could but has had to go back to work to support the family.

Crouch’s father and Sich have been helping to take Maddie to appointments when Crouch isn’t around. Her work has also been flexible, agreeing to transfer her to a location closer to her home so that she can be near Maddie.

“I just couldn’t do it. I was 40 minutes from my daughter. I was too far away,” she said. “They could have just let me go, but they’re working with me.”

The community has reached out to support them as they’ve needed. A fund is being set up at a local bank where donations will be accepted on Maddie’s behalf.

Atwood and friends Sierra McClain and Faith Schubnell are organizing bake sales during basketball games and swimming meets. They’re also ordering rubber bracelets emblazoned with the phrase “Help Support Maddie” to help raise money as well.

Those efforts have helped relieve some of the emotional weight of the situation, even if just a little bit, Crouch said.

“It’s a little rough right now, and anything to help Maddie. She’s going to need a lot of things that we haven’t thought of,” she said. “I’m getting to the point where I can talk about it. I feel like I’ve been crying for months now.”

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