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‘ Our lives turned upside down’ as brain tumor emerges in a young woman

February 26, 2018

Brain tumor turns family's lives 'upside down'Joyce Jones give kiss of encouragement to daughter Erika before a physical therapy session.

Story and Photographs © Robin Rayne Nelson/ZUMA Press All Rights Reserved

Tears welled in Joyce Jones’ eyes as she watched Shepherd Spinal Center therapists help her daughter Erika Jones stand for the first time in months.

“This is a milestone,” Joyce Jones said, struggling to keep her emotions at bay. 

Her daughter was recovering from surgery four months earlier to remove a massive tumor that left her with brain damage, paralyzed on her right side and unable to walk or speak more than a few words.

“Our lives turned upside down this past October. Erika is my only child. She’s 32 and was in perfect health — or so we thought,” said Joyce Jones, who lives near Lassiter High School with her husband John Jones.

Their daughter was on the way home from work when the seizure occurred. She managed to drive to a Dunkin’ Donuts parking lot before slumping over on the wheel. A customer saw her and called 911, she said.

Paramedics broke into her car and rushed the 2003 Lassiter High School graduate to Northside Hospital where tests revealed a massive brain tumor that was nearly the size of a softball.

“Her doctors called it a meningioma. It was on the front part of her brain and around her spinal cord. They said it had been growing for at least ten years and had actually squeezed and moved her brain over. They were surprised she didn’t have headaches and vision problems earlier,” Joyce Jones explained.

“It took the surgical team ten hours to remove it,” she said. “Swelling on her brain forced the surgeons to do a second operation the next day. She had five more in the weeks after that. Now she has a shunt in her brain for the excess fluids, a G-tube in her abdomen to help with feeding and a tracheostomy so she can breathe. “

Erika lived with a roommate for several years but returned home last year while she looked for a place of her own. “She was just about to move into an apartment and live on her own when this all happened,” Joyce Jones explained.

“She had her new furniture purchased. It was going to be that next weekend. But that’s all changed now.”

Erika Jones was transferred to Shepherd Spinal Center in November. She remainsparalyzed on her right side and is unable to walk. Though she has significant cognitive deficits, she manages to say a few words. “She can say ‘Hi’ and ‘God’ and ‘I love you,’ and she still smiles. The Erika I knew is coming back,” her mother said. “I can see that feistiness. She is a fighter.”

Brain tumor turns family's lives 'upside down'

Erika Jones has physical, occupational and speech therapy five hours a day, six days a week. She wears a foam helmet to protect her head and awaits another operation in a few weeks to replace bone in an exposed area on her skull.

Her mother spends hours every afternoon at her daughter’s hospital bedside before returning to her family’s Marietta home. On this day, she had good news to share with her husband John Jones, retired bus driver for Cobb County schools whom students and friends called “JJ.” “I knew this was not going to be a walk in the park,” Joyce Jones continued. “But thinking back to when Erika was being wheeled into the operating room, she wasn’t fearful.

She never cried. She said she knew it was all in God’s hands and he would lead the surgeons. Today the therapists got her in a standing frame and raised it up so she could stand up and lean on the tray. I know it was hard for her but she’s doing it.”

Brain tumor turns family's lives 'upside down'

That her daughter was awake and smiling was in itself an answer to prayer, she said. “Before they removed the tumor doctors said she could have a stroke during the surgery. I remember praying, ‘Dear God, please let her wake up and be able to do some things. I don’t want her in a nursing home.”

Joyce Jones and her husband are hopeful their daughter can be released from Shepherd Center at the end of January and return home.

What comes next has them both intensely anxious.

“Her doctors said recovery will be a slow process and they said I’ll need to be patient. We’ll need to adjust to our ‘new normal,’ but JJ and I really have no idea what that will be like,” she added. “Her doctors can’t say if she will ever walk or drive again. It may take years.”

“Erika’s brain injury was devastating and tragic,” explained Dr. Anna Elmers, M.D., a physical medicine and rehabilitation specialist at Shepherd Center who supervises Erika’s therapy. “She will be dependent and need 24-hour care, seven days a week for the foreseeable future. It will be quite expensive.”

“Erika will need help in all parts of her day, including feeding, bathing and dressing,” according to Ali Harris, Erika’s primary physical therapist at Shepherd Center. “She has what is known as ‘global aphasia.’ She doesn’t always comprehend what people are saying to her and she’s not able to express herself verbally,” she added. She may be able to walk again in time, she added.

The bedrooms in the Jones’ two-story home are on the second level. They hope to convert their first-floor dining room into a bedroom for their daughter, but need plumbing and carpentry help in expanding a first-floor bathroom to accommodate her wheelchair.

“I lay awake at night worrying if Erika will recognize this is her home. We’re going to make this a comfortable place for her. We considered selling and relocating to a single-level house but we didn’t want to leave our friends in this neighborhood.

Many have offered their help in caring for Erika,” Joyce Jones explained. “We will need their help.”

Erika Jones’ health insurance from her job as a music production assistant will cover the costs of a hospital bed and portable hydraulic lift for a while, she said. Jones hopes to arrange for Social Security disability and Medicare coverage in the coming days.

“I’m 64 years old. John is 77 and recovering from back surgery. He’s weak from emphysema and diabetes and he’s on oxygen. Erika weighs 190 pounds and I don’t think we are strong enough to lift her in and out of her bed and wheelchair, even with the lift,” she said.

A skilled care facility is not an option, she emphasized. “Our daughter needs to be home where she can get the love and care she needs. We have a few weeks to get ready before she comes home. A neighbor, a niece and one of Erika’s close friends have volunteered to help care for her.”

The couple worries about finances, as they are on a limited, fixed income. 

“We’ll need money for diapers and pads for Erika and a lot of things Medicare won’t cover. I’m not sure how we’re going to meet those expenses,” Joyce Jones explained. Her daughter will need a wheelchair-accessible van for trips to doctors and physical therapy that will continue in Decatur for the foreseeable future, she explained. Insurance will not provide transportation, and the type of van Erika requires cost at least $30,000, she said.

Brain tumor turns family's lives 'upside down'

“This is a life changing event that nobody planned and they definitely didn’t budget for in life,” explained Nancy Hornsby, a family friend who arranged a Go Fund Me account to help with Erika’s support expenses once she returns home. She hopes to raise at least $70,000. “Erika had a full time job and paid her own bills. Now her parents are trying to make sure her outstanding bills are paid as well as take care of their own obligations. Joyce and JJ are unemployed and living off retirement income,” she said.

“There is a long road ahead for all of us involved with Erika, probably much longer than any of us choose to realize,” Hornsby said.

What may help Erika Jones recover as much as anything costs nothing. “She used to play ball for the AAU, the Amateur Athletic Union,” Joyce Jones recalled. “It would be good if some of the girls she played with could come to visit her once she’s home. I know that would bring a smile to her face and help her heal.”

As another physical therapist worked with Erika on an electrical stimulation cycle designed to restore function to her stiff right leg, Joyce Jones collected her coat and bag. The day’s therapy was nearly done and her daughter would soon be transported back to her hospital room with her mother close behind.

“Erika and I were the best of friends, like partners in crime. She used to call me15 times a day, and there were times I kidded her about that. ‘You just called me an hour ago,’ I remember saying to her,” Joyce Jones recalled.

“But now I wish with all my heart she could pick up the phone and call me.”

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