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Erika’s Long Road Back

March 18, 2018

Erika's Journey Home: The slow road to recovery from a brain tumor

Story and Photos © Robin Rayne Nelson/ZUMA Press

Erika Jones’ hand trembled as she gripped the pen to write a “K” on a sheet of paper taped to a table. Her attempt was slow but determined. “You’re doing it, Erika, keep doing it! Trace that K!” therapist Celeste Whirt cheered.

 Jones was relearning how to write her name at the age of 32. It was a small step on a long road to recovery from surgery that removed a brain tumor five months ago. 

 Jones was discharged from Shepherd Spinal Center in Atlanta in late January after several months of intensive physical therapy. She returned to live with her parents in Marietta and is now totally dependent on them for her care.

Joyce and John Jones continue to adjust to their new reality of caring for their brain-injured daughter. They are retired and living on fixed Social Security Disability incomes. Both have serious health issues of their own.

Erika's Journey Home: The slow road to recovery from a brain tumor

Joyce Jones, 64,  was an executive recruiter before a colon cancer diagnosis forced to leave her career in 2004. John Jones, 77, is a former bus driver for Cobb County Schools and former business owner.  They relocated to Georgia from Michigan in 1994 and attend Transfiguration Catholic Church in Marietta.  Erika Jones is a 2003 graduate of Lassiter high School and attended Middle Georgia College and Chattahoochee Technical College.  Prior to her illness she worked in marketing and media production in Norcross. She is the Jones’ only child together.

Erika's Journey Home: The slow road to recovery from a brain tumor

“Our lives were turned upside down,” Joyce Jones reflected.  “But I am committed to caring for my baby until the day I die.” “Her doctors called it a meningioma,” she explained.  “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.”

The surgery left Erika Jones paralyzed on her right side and unable to walk. “Her speech is mostly babbling. She’s unintelligible except for a few words. She can say ‘Hi’ and ‘I love you,’ and she can nod her head to communicate ‘yes’ or ‘no.’ Her comprehension of what we’re saying wasn’t very good a few months ago, but she understands more now,” Joyce Jones said.

Erika's Journey Home: The slow road to recovery from a brain tumorErika Jones smiles and bops her head when she hears her favorite music. That gives her mother hope in the midst of uncertainty and fatigue from caring for both daughter and husband.  Their former sunshine-drenched dining room in now a bedroom for their daughter. It is large enough to accommodate a hospital-style bed and an electric lift that helps Joyce Jones move her daughter from bed to wheelchair and back several times a day. 

A large television was installed near her bed so Erika Jones has something to watch during the day. Speech and physical therapists visit several times each week to work with Erika Jones, who spends most of her day in her wheelchair or a recliner chair in the family room. 

Erika's Journey Home: The slow road to recovery from a brain tumorShe’s always strapped into her chairs to keep her from falling if she dozes off, “ Joyce Jones explained. She sponge-bathes her daughter, feeds her and routinely changes her diapers. She spends hours every day doing range-of-motion and other strengthening exercises Erika Jones’ therapists showed her. She is on constant lookout for bedsores and skin irritations. 

“I sleep at night on the sofa nearby so I can hear Erika if she moves, but I don’t sleep much,” she said. “Our bedrooms are actually on the second floor but it’s impossible to navigate with a wheelchair,” she explained. “John 

sleeps upstairs. He relies on oxygen because of his emphysema and doesn’t have much strength.” 

 “Our dining room was carpeted before Erika came back to live here. A friend bought sheets of thick plywood and screwed them down over the carpet so we would have a hard surface for Erika’s heavy bed, her wheelchair and the lift. That made it much easier to move things around,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

A relative purchased a new multiple-position hospital-style bed and had it shipped from California for Erika Jones’ bedroom. Shepherd Spinal Center staff contributed the electric lift. One friend donated a large supply cabinet where Erika’s Jones’ extra diapers and bed pads are stored. Another friend installed colorful curtains in the doorway to provide privacy. A team of neighbors takes turns in supplying meals every few days to the Jones home. “We have such kind and loving neighbors. They’ve been bringing meals ever since this happened so I could just focus on caring for Erika,” Joyce Jones continued. 

“I couldn’t bear the idea of Erika living in a nursing home. She’s our daughter and we will do everything we can to help her get better right here. She wouldn’t get that love in a nursing home,” Joyce Jones said, wiping a tear. Erika Jones has had a number of visitors since her return to her parents’ home, including friends from her AAU basketball team who learned of her situation from a Marietta Daily Journal story in January. “She lights up when she sees her old friends,” she said.

Erika's Journey Home: The slow road to recovery from a brain tumor

Speech and language pathologist Whirt visits Erika Jones several hours each week for therapy that helps her relearn to speak. She guided Erika Jones’ hands to write her name on a recent session, encouraging her to push through the struggle as she helped her express herself verbally.

“She really wants to do things for herself. To Erika, the sounds she makes are words.  Erika has aphasia from injury to the part of the brain that controls speech.  She  knows what she wants to say but the words can’t get out. They are garbled. I’m certain that becomes very frustrating for her,” Whirt said.

“Our brains have this amazing ability to regenerate, especially at Erika’s young age. I work with Erika to help her find the right words. She can continue to improve for many years and nobody really knows how far she can go. 

I think one of the best things to help Erika is more visits from her friends. I’m sure she gets lonely,” Whirt said.

She expressed her concern for Erika’s Jones’ mother as well. “Just being able to leave the house for an hour or two with a friend while someone watches Erika is a big help.” 

Erika's Journey Home: The slow road to recovery from a brain tumorJoyce Jones admitted the constant caring for her daughter has chipped away at her own health.

“I know I’ve lost some weight. My friends are worried. I know I need help to care for her. Even using the Hoyer lift, it hurts my back to move her. We hope to have a home health nurse come several hours a day soon. We still hope to remodel the main floor bathroom, adding a shower that can accommodate her wheelchair. Until then, I’ll keep giving her sponge baths in her room,” Joyce Jones said.

After Erika Jones’ story was published in a local newspaper, readers contributed nearly $13,000 to a GoFundMe account to help with her expenses. Joyce Jones and her husband will use those funds toward a used van, modified to accommodate a wheelchair. 

“John hopes to sell our car and Erika’s car so we have enough for the van,” Joyce Jones said. “Erika’s therapists come to our home for now, but we’ll need to drive her to daily outpatient physical therapy in Decatur a few months when the home visits end. We’ll need to take Erika for doctor visits too.” “I can’t predict the future. Her doctors are very good but they can’t predict how she will do either. We just take it one day at a time,” she said.

Friends set up a GoFundMe site to help the family with Erika’s care expenses.  https://www.gofundme.com/%20%20erika-strong

Erika's Journey Home: The slow road to recovery from a brain tumor

 

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