Author: Leslie Toldo
Throughout her short life, Carena Jackson-Murray has lived with a rare genetic disorder that causes tumors all over her body. Typically, with neurofibromatosis (NF), tumors are benign.
Everything changed two years ago, when her mother, Tyreasa, noticed something different about a tumor on Carena’s back.
“When she was a baby, it was a little lump, I could kind of feel, then it started growing when she was 9,” she said.
The tumor was not only growing, but it was also having a huge, negative impact on Carena’s life.
“It was painful. She had to take pillows to class so she could sit, and kids bullied her,” Tyreasa said. “She couldn’t sleep lying down.”
Unable to bear watching her daughter suffer, Tyreasa took Carena to a doctor. The 9-year-old ultimately needed a risky surgery to remove the tumor close to her spine. That surgery revealed heartbreaking news.
“The tumor was cancerous,” Tyreasa said. “And when they removed it, they discovered the cancer had spread to Carena’s lungs.”
Doctors at Karmanos Cancer Institute in Eastpointe, where the Jackson-Murray family lives, recommended radiation be part of the treatment plan, not just any radiation. Instead of traditional radiation, Carena’s oncologist referred her to radiation oncologist Dr. Christian Hyde at the McLaren Proton Therapy Center in Flint, part of the Karmanos Cancer Network.
Dr. Hyde is a proton therapy sub-specialist, having completed a one-year fellowship dedicated to the new technology, something few radiation oncologists have done. He has treated patients as young as age 4 using proton therapy because it is a safer option for children than traditional radiation therapy.
“Because children’s bones and organs are still growing and the brain continues to develop until age 25, avoiding radiation damage to these areas is essential. Protons can literally ‘stop on a dime’ inside the patient’s tumor, without exiting into healthy tissues, the way traditional X-rays do.” Dr. Hyde said. “Traditional radiation is effective at killing cancer cells, but often gives more radiation than necessary to healthy body parts.”
While she was happy to have a less risky treatment option for her daughter, Tyreasa says she was terrified. She fought to keep it together for her child.
“If you cry in front of them, it scares them,” Tyreasa said. “If I cried, I waited till she went to sleep, or I went outside. I tried to keep her in good spirits and let her know she would be okay.”
Tyreasa could not help but worry about how she would get Carena to daily proton therapy appointments so far from home. Then, she learned about the Hospitality House at McLaren Flint.
“They just said you guys don’t have to worry about anything. We were like, ‘what?’” Tyreasa said.
For ten years, the Hospitality House at McLaren Flint has offered long-distance patients and their caregivers a home away from home. Along with 32 guest rooms, it offers four complete kitchen units, a library, laundry facilities, games, multiple comfortable living areas, and even food, toiletries, and other items for guests.
“It will make you feel more relaxed. It’s just a really nice place to ease your mind,” Tyreasa said. “They have everything that you need.”
Though the nightly rate is a small, suggested donation, an extended stay could still have been financially devastating for a family like Tyreasa’s. Fortunately, the Hospitality House provides the same great accommodations, regardless of the guests’ ability to pay.
“We will never turn anyone away,” said hospitality director Teresa Williams.
Lifting that burden from Tyreasa, who was also dealing with her own health issues, is what Williams says the Hospitality House is all about.
“Tyreasa was so appreciative of the House,” Williams said. “She often told us that she loved us for what we do, and I felt the same about her!”
Carena and her younger sister spent most of the summer of 2021 and the early part of that next school year at the Hospitality House. Despite all they had been through, Tyreasa says, her daughters thrived.
“They had the library and another area to do schoolwork,” Tyreasa said, “They got to do projects in the arts and crafts room and hang out in the playroom.”
Treatments for her tumor are over, but the rare genetic disorder, NF, that caused Carena’s cancer is still there, still sparking fear in Tyreasa.
“It’s heartbreaking because there is no cure,” Tyreasa said. “I am afraid that the tumors could grow and become cancerous again. So that’s always going to be in the back of my mind.”
The hope Tyreasa found at the Hospitality House will provide some solace amid her worries about Carena’s future health because, she says, she knows that McLaren’s “home away from home” will always be there if her family needs it.
For more information about proton therapy, visit mclaren.org/protontherapy.