Medical imaging and blood tests soon uncovered the grim reality: Jonathan had a tumor on his brain stem. The diagnosis was rare — he was experiencing primary central nervous system lymphoma, an uncommon form of brain cancer.

“He always said that his job attacked him,” said Allie Parrish, Jonathan’s wife and a neurodiagnostic technologist at Norton Children’s Hospital. “He went from being in surgery with his colleagues to being a patient being taken care of by his friends.”

Jonathan faced many health challenges following his cancer diagnosis, including a bout of pneumonia and cytomegalovirus that required hospitalization in July.

Throughout the years, the Parrishes had been deeply involved in their Southern Indiana church community, along with their two young children. Unfortunately, Jonathan’s health crisis kept him from attending Sunday services.

“He made it clear to me and to others how much he missed church, just the act of worshipping as a collective group,” Allie said. “I think maybe Jonathan knew he wasn’t going to get better, and he just really wanted to worship with the church.”

Bringing the ‘church’ to the hospital

Jonathan’s health was deteriorating, and time was running out to fulfill this heartfelt wish to worship with his church family.

This poignant request caught the attention of Kristin Pickerell, chief nursing officer at  Norton Brownsboro Hospital.

“When we heard that Jonathan really missed his church family, and his wife knew it was one of his final wishes, we needed to make it happen,” Kristin said.

Staff at the hospital grappled with the intricate challenge of fulfilling the Parrish family’s wish, while concerns about Jonathan’s delicate respiratory health and compromised immune system further complicated matters.

Originally, the team discussed turning a conference room into a choir room, having a virtual performance and allowing members to visit Jonathan two at a time. When technical challenges arose, the team assessed whether the hospital’s small chapel would accommodate 20 choir members and a livestreamed service.

Ultimately, recognizing her husband’s fragile condition, Allie proposed an alternative approach: an outdoor service at the hospital, with Jonathan viewing from a window.

Her plan was approved, and immediately the space was cleared, cleaned and prepped. The hospital’s food and nutrition department supplied water for attendees, and security measures were put in place to streamline visitor flow.

“This was something that every team member at Brownsboro worked really hard to pull off,” Kristin said.

A final wish fulfilled
Around 6:15 p.m. that Sunday evening in late July, Jonathan was accompanied by Allie and an intensive care unit (ICU) nurse and moved to a pedway with windows overlooking the service in the hospital’s third-floor courtyard.

“The night exemplified what we do and why we do it,” said Autumn Chapman, ICU nurse manager. “This request was fulfilled because of the efforts and dedication of multiple departments and staff members.”

On what would be one of his final days, Jonathan was able to reconnect with his church community before he passed away.

“It was an incredible blessing,” Allie said. “We were able to sing and smile and cry, and Jonathan laughed for the last time. I can only remember it as being a joy.”

During the two-hour outdoor service, church members sang, offered prayers and shared stories of how Jonathan had profoundly impacted their lives. All the while, Jonathan and his nurses took it all in from their vantage point behind the glass.

“We always talk about being a Norton family, and through all of this, and despite the sadness, we were treated like family,” Allie said. “I know [Jonathan] was so grateful to Ryan Stettenbenz [manager, neurodiagnostics, Norton Brownsboro Hospital] and the entire team. That hospital and that floor was where he worked, and he considered it another home. To have this happen at his ‘home,’ we are beyond blessed.”

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What drives someone to pedal 100 miles year after year? For Scott, it was the loss of his older brother, Mark Walters. Mark was treated for a brain tumor at Norton Cancer Institute, where Scott and Mark’s sister worked. Mark ultimately lost his battle at the age of 53. For Scott, it was the “most devastating” loss he has experienced in his life. According to Scott, watching his parents grieve was especially hard.

“A child is supposed to bury their parents. A parent is not supposed to bury their child,” he said.

Scott was and is still determined to prevent other families from experiencing that same devastating loss. Scott thinks a lot about his brother as he rides on the day of Bike to Beat Cancer.

“The Mile of Silence is one of my favorite parts, because it provides a time to reflect and is motivating,” Scott said.

The camaraderie of fellow riders — especially those on the 100-mile route — as well as the volunteers cheering and supporting riders at the pit stops also helps with encouragement. “People thank you, refill your water bottle and hold your bike while you rest at the stops. The stops are so impressive,” Scott said.

Not even rain, storm winds or a pandemic can stop Scott from riding in memory of his brother.

Recalling his ride in 2018 as thunder boomed and lightning flashed, Scott said, “People in their cars driving past me must have thought I was crazy.”

At the time, the thought of stopping was not even an option.

“I thought, as bad as this is, and as hard as the winds are blowing, this can’t even compare to what my brother went through,” Scott said.

In 2020, amid pandemic-related changes to the event, Scott kept his promise to his donors to ride 100 miles by cycling a loop around Georgetown, Kentucky, near his home.

While he rides, Scott carries a list of names with him of loved ones who are battling cancer or who have lost their battle with cancer. After crossing the finish line, Scott gives his medal to one of the people or families on his list. He also shares the Bike to Beat Cancer jersey he earns every year with a family member or friend who is starting to cycle — to encourage them to join Bike to Beat Cancer.

Each year, Scott has been a Bike to Beat Cancer Champion, raising more than $1,000 to support Norton Cancer Institute. Scott hopes that through the funds raised, additional treatments and ultimately a cure for cancer will be found.

According to Scott, as long as his legs will keep pedaling, he’ll keep riding in Bike to Beat Cancer.

“I know if I am tired, and it’s painful, it’s nowhere near what my brother and other cancer patients go through,” Scott said. “I am going to finish in tribute to their fight.”

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Visitor restrictions were in place due to the coronavirus pandemic, but he found comfort in knowing his wife, a nurse at the hospital, was working nearby.

A computed tomography (CT) scan revealed a golf ball-sized mass on his brain. From there, Ben was transported to Norton Brownsboro Hospital for assessment by the Brain Tumor Center team.

Surgeons would be able to operate to remove the tumor from Ben’s right frontal lobe, but the surgery would put him at risk of losing mobility on the left side of his body. Personality changes also were a possibility.

After about a four-hour surgery, Ben was relieved.

“Surgery was really successful,” said Ben. “When I woke up, I could move all my limbs and was, mentally, very strong.”

Surgeons were able to remove most of the mass, but pathology confirmed the tumor was cancerous — astrocytoma.

“That’s one of the more common brain tumors,” said Kaylyn Sinicrope, M.D., Ben’s neuro-oncologist the Norton Brain Tumor Center, a collaboration of Norton Neuroscience Institute and Norton Cancer Institute. “It’s similar to but less aggressive than a glioblastoma, which is more commonly known.”

A grade 3 astrocytoma, Ben’s cancer was growing slower than glioblastoma, but faster than lower grade astrocytomas. A grade 3 astrocytoma tends to be less uniform in appearance and can invade neighboring tissue.

A plan of attack was in the making. The multidisciplinary Brain Tumor Center team is made up of physicians and others who bring their own expertise to every case and offer their viewpoints at a regular review of patients’ progress.

“They all had great bedside manner,” Ben said.

The team, consisting of a neuro-oncologist, behavioral oncologist, surgeon and many more specialists, decided 30 rounds of radiation, coupled with oral chemotherapy, would be the best approach.

In August, Ben completed his treatment, and he was ready for the Norton Cancer Institute Bike to Beat Cancer ride in September.

Cancer doesn’t stop for the pandemic. It didn’t stop for Ben. Yet, despite his diagnosis, his drive to help others didn’t waver. He mustered up the strength to ride 35 miles in honor of his brothers and sisters fighting cancer. His cycling team raised more than $10,000.

“Ben is such an inspiration,” Dr. Sinicrope said. “He’s someone I’m going to tell my other patients about to help inspire them.”

The post Brain cancer doesn’t stop for the pandemic; it didn’t stop for Ben Smith appeared first on Norton Healthcare.

“I’ve always had an interest in fixing problems and helping people,” said Dr. Sinicrope, who’s now with Norton Cancer Institute.

Dr. Sinicrope, who trained at University of Texas MD Anderson Cancer Center in Houston and Harvard University in Boston, Massachusetts, treats brain tumors and other neurological conditions related to cancer.

According to Dr. Sinicrope, she chose oncology because it’s a specialty where physicians routinely form bonds with their patients. She chose neuro-oncology because she is motivated to help advance the treatment of brain tumors. She plans to focus her research on glioblastoma, a particularly dangerous brain tumor.

“I see so many patients who have so few treatment options,” Dr. Sinicrope said. “Glioblastoma is such a devastating disease. It’s very motivating for me.”

The sophisticated clinical trials at the Norton Healthcare Brain Tumor Center shows it is on the leading edge of cancer treatment research, making it a lot like the academic centers where she trained. Dr. Sinicrope has been the lead author or co-author on a number of peer-reviewed research papers.

Originally from Modesto, California, Dr. Sinicrope earned an undergraduate degree in biology before attending Boston University Medical School. She did her medical training in neurology at Brigham and Women’s Hospital and Harvard.

“After going through neurology, I saw the oncologists and how close and connected they were to their patients. I really wanted to have that relationship with patients,” Dr. Sinicrope said.

After serving as chief resident in neurology at Harvard, Dr. Sinicrope did a fellowship in neuro-oncology at MD Anderson.

Dr. Sinicrope also treats neurological conditions related to cancer, including headaches, tremors, seizures, nerve conditions, inflammation of the brain and cognitive conditions. These Issues can be the result of either the cancer itself or treatment.

“Chemotherapy and the disease process can be toxic to the nervous system,” Dr. Sinicrope said.

When deciding where to practice medicine, Dr. Sinicrope said she was impressed with Norton Healthcare’s level of collaboration of multidisciplinary approach, something she said she hadn’t seen outside of academia.

The Brain Tumor Center is a collaboration of Norton Neuroscience Institute and Norton Cancer Institute. The Brain Tumor Center’s tumor board meets to consider each patient and allow a free flow of viewpoints from specialists across a broad spectrum of related disciplines.

Dr. Sinicrope is married to another physician, Brent J. Sinicrope, M.D., an orthopedic surgeon who did his medical training in Louisville. Together, they have a 7-month-old baby boy. When she’s not working, Dr. Sinicrope likes cooking and spinning.

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A trip to her primary care doctor and then an ear, nose and throat specialist didn’t bring a diagnosis. Six weeks of physical therapy for vertigo didn’t help, either.

Emily had other symptoms, too. Hearing loss that came and went. Hiccups. Shooting pain in her neck and the top of her head.

“I kept telling people I think I have a brain tumor,” Emily said.

Her primary care doctor scheduled a magnetic resonance imaging (MRI) scan. Sure enough, Emily had a tumor on her spinal cord and brain stem.

“It was surreal. Your whole life changes in a second,” Emily said.

A rare, but highly survivable cancer

Emily was diagnosed with an ependymoma, a rare cancer of the central nervous system. Only about 1,000 adults a year in the United States are diagnosed with this type of cancer. The overall five-year survival rate for ependymoma is almost 85%, and better than 90% for adults ages 20 to 44.

Emily and her husband, Michael, went to see neurosurgeon David A. Sun, M.D., Ph.D., and radiation oncologist Aaron C. Spalding, M.D., Ph.D., at the Brain Tumor Center, a collaboration of Norton Neuroscience Institute and Norton Cancer Institute.

Drs. Sun and Spalding help lead the Brain Tumor Center — a multidisciplinary team of neurosurgeons, radiation oncologists, neuro-oncologists, neuroradiation specialists, neuropathologists, speech therapists, physical therapists, a behavioral oncologist and a nurse who serves as a patient navigator.

Emily remembered Dr. Spalding describing her situation as “a good tumor in a bad spot.” Part of her tumor was on her brainstem, which is both incredibly delicate and responsible for such basic functions as breathing.

“Dr. Sun said, ‘The tumor is a weed in your brain. You can’t just pull the weed out of the brainstem. It’s too dangerous. You have to radiate the roots,’” Emily said.

Dr. Sun performed brain surgery on Emily, removing 99% of the tumor but leaving the 1% on her brainstem.

“He saved my life. I’m forever grateful to him and Dr. Spalding,” Emily said.

Seeing the brain tumor multidisciplinary team in a single day

To kill the cancer on her brainstem, Emily underwent six weeks of radiotherapy, five days a week, with Dr. Spalding.

Between surgery and the start of radiation, Emily saw the other members of the Brain Tumor Center team.

“They cover everything, top to bottom. The whole day, I literally saw everyone in their office. They wanted to see how I was doing,” Emily said.

Emily thought about going out of state for her cancer treatment, but decided against it and is glad she stayed in Louisville.

“I loved my doctors. They’re my dream team. The care I got at Norton, I felt like a VIP,” she said. “At Norton, you get a whole team of people, and they all communicate with you. Go somewhere else, and they don’t have that.”

Evicting ‘Nerval’ the tumor

Emily tried to keep her sense of humor throughout. She hated the word “tumor” so she decided to give it a name. She came up with Nerval “out of nowhere.” She’d imagine Nerval getting kicked out of her brain and had her brother, an artist, draw a picture of Nerval as a person being evicted.

Emily’s last treatment was Jan. 31, 2017, and so far, life has imitated art. Emily’s surgery and radiation were a success. Her tumor was, in fact, evicted.

Each year on Jan. 31, her “cancerversary,” Michael presents her with a cake to celebrate.

Compassionate cancer care

The mother of three boys, Emily works as a research coordinator in the office of Undergraduate Medical Education at the University of Louisville School of Medicine, where medical students are taught communication skills including how to give a patient bad news.

Emily said her experience gave her a firsthand experience of what compassionate care looks like — and how it affects not only patients, but their family, co-workers and friends.

“Cancer is a lonely place, but when you lean on others, it does help,” said Emily, who began meditating when she received her cancer diagnosis and made daily lists of what she was grateful for. “This made me realize even though I had cancer there were still many positive things in my life

Emily has joined ependymoma support groups and also undergoes scans twice a year to ensure the tumor has not returned.

“My story is not done. Cancer has been a chapter in my book, but it’s not the only one,” she said.

Emily’s advice to other ependymoma patients is to keep hope no matter what and take life one day at a time.

“Cancer teaches you YOLO [you only live once],” Emily said, adding that the experience also taught something else: Trust her intuition. “As a cancer patient, you know your own body. Keep going until you find an answer.”

The post Emily Carr knew what the issue was — she just had to keep pushing appeared first on Norton Healthcare.

“Vaccines are basically a means to try to activate one’s own immune system to recognize the presence of cancer and eliminate it,” Dr. LaRocca said.

The phase 2 clinical trial for this vaccine was conducted by AIVITA Biomedical. Patients who were part of this all followed the same process:

• A blood sample was collected and submitted to be processed for antigen-presenting immune cells.
• Proteins from each patient’s tumor cell line were used to develop a specific vaccine personalized for that patient.
• AIVITA Biomedical shipped each patient’s prepared vaccine to Norton Cancer Institute, where it was administered at specific time points in addition to the patient’s standard treatment.

Initial trial results, released by AIVITA Biomedical in August 2019, suggest a significant decrease of tumor burden among study participants. Should this ultimately translate to survival, we will be honored to have been part of the work to move glioblastoma from largely untreatable to treatable.

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Prior to his son’s birth, Matt had undergone testing to find the reason for his troubling two-year history of headaches, dizziness and periodic blurred vision. He underwent an MRI on March 24.

As the new dad visited his wife and son later that day, the MRI center called. Matt needed to get to his doctor — fast!

Matt drove from the hospital straight to his primary care provider’s office. The MRI confirmed he had a brain tumor. He was told he would be scheduled to see a specialist, but Matt wanted answers right away.

In short order, Matt was scheduled him to see David A. Sun, M.D., Ph.D., neurosurgeon with Norton Neuroscience Institute.

Matt described what happened during his four-hour appointment with neurosurgery and oncology specialists who work together through the Brain Tumor Center, a collaborative program of Norton Neuroscience Institute and Norton Cancer Institute.

• Sun went over his scans and a well-defined plan for surgery and follow-up radiation treatment.
• Aaron C. Spalding, M.D., Ph.D., radiation oncologist, went over the six-week radiation care plan in detail.
• Renato V. LaRocca, M.D., an oncologist who specializes in brain tumors, provided more specifics about Matt’s tumor and what to expect going forward.

According to Dr. Spalding, this integrated approach helps provide the best care possible. The patient can have their case reviewed by a team and undergo surgery, if needed, in two to three days.

“Individually, our disciplines provide excellent patient care, but coordinating across specialties is a good example of how the whole can be so much more than the sum of its parts,” he said.

Ependymoma: a rare tumor

 Matt’s surgery to remove the brain tumor lasted more than 10 hours. Identified as an ependymoma, the tumor measured about 3.5 centimeters (just less than 1.4 inches) and was wrapped around his brain stem.

Ependymomas are rare and usually grow slowly. It’s not uncommon to live with one for a long time with no major symptoms. Since the site of origin often prevents complete surgical removal, radiation therapy is typically used to destroy remaining disease cells.

Incredibly lucky

 Matt has done well in the two years since his diagnosis. He has experienced few side effects from his surgery and 33 radiation treatments, and will get regular follow-ups over the next two years.

“I feel incredibly lucky,” Matt said. “Dr. Sun told me it’s almost unheard of to have a tumor this size and walk away with no physical deficits.”

Family and friends celebrated his 37th birthday with a casino-themed fundraiser to help cover some of the family’s medical bills, with the rest donated to the Norton Healthcare Foundation to have a room named in Matt’s honor at Norton Cancer Institute – Brownsboro.

The Davises got to know Dr. Spalding well during Matt’s many radiation treatments. When they dropped by for a recent visit, Dr. Spalding was delighted to meet the family’s newest member, 7-month-old Elly.

“Life is full of miracles,” Dr. Spalding said with a smile.

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These are difficult questions that many of us will never need to answer, but for patients facing brain cancer or a brain tumor, these questions are part of the reality of their diagnosis.

Treatment for brain cancer often involves more than therapies to treat the cancer. Emotional and psychological care can also be important parts of the treatment journey.

Rebecca Reichert,  APRN, is a family psychiatric and mental health nurse practitioner with Norton Cancer Institute. She provides support to patients with cancer and their families.

Here, she offers her insight on the issues and therapies that are important to patients with a brain cancer or brain tumor diagnosis.

What questions or concerns do patients have after they receive a brain cancer or brain tumor diagnosis?

Patients with a brain tumor or brain cancer diagnosis often worry about how to tell their loved ones about their diagnosis and how their illness will impact others. They worry also about medical bills, getting back to work and logistical matters like transportation and medication costs.

Of course, patients with brain cancer or cancer that has spread to the brain, worry about death and dying, especially when they have a terminal diagnosis. They may worry about behavior or personality changes such as whether they’ll be moodier or confused. Sometimes patients ask if they could have done something differently to prevent their brain cancer or brain tumor, or whether they missed signs or symptoms of their cancer.

When a patient has a brain cancer or brain tumor diagnosis, what strategies do you suggest for telling their family or loved ones about their diagnosis?

For patients who have children, I suggest that they meet the kids where they are based on their age, developmental milestones and their ability to understand the cancer diagnosis. Children may need additional support through psychotherapy, art therapy or school involvement. It’s important for patients to emphasize that the cancer diagnosis is not the child’s fault, and for parents to use the word “cancer” instead of “sick” so children know the cancer is not contagious, and they can still be affectionate with their parent without getting sick. I encourage parents to keep expectations and schedules intact as much as possible.

The following are additional recommendations for children.

For kids age 6 to 12 years old:

• Keep the conversation short and use props to explain the diagnosis or treatments.
• Be open to a range of reactions to the news that a parent or other family member has cancer.
• It may be helpful to include the children’s teachers in on the news in case there are behavioral changes at school.
• Update children regularly and offer ongoing communication about treatment and progress.
• Give your children jobs to do so they feel useful and less helpless.
• Explain any physical changes and consider discussing the cancer care plan with your child.

For teens age 13 to 16 years old:

• Remind teens that their siblings and friends still need them.
• Encourage them to talk to and seek support from their peer group.
• Find ways to give teens a sense of control.
• Reinforce the love, expectations and support they have available to them despite the changes brought on by the cancer diagnosis.

When patients are coping with late-stage brain cancer or an incurable cancer, how do you help families through that?

With an incurable brain cancer prognosis, we focus on short-term goals, as well as finding meaning in the present, and allowing gratitude for each day. We discuss legacy building opportunities, such as letter writing, recording videos or making a bucket list. We often talk about how to optimize quality of life through non-medication and medication interventions. I work with patients to recognize aspects of their life where they have control, such as sleeping, eating, exercising, taking medication and going to treatments, and how to feel empowered by those decisions. Some brain tumors are terminal while others are manageable, so patients may have to look at their tumor as a chronic disease such as diabetes or hypertension that can be managed for a long time.

What resources are available for patients with brain cancer or a brain tumor and their families?

Norton Cancer Institute’s Behavioral Oncology Program offers patients and immediate adult family members medication management and counseling services. Norton Cancer Institute also offers art therapy, music therapy, social work support and other activities through the Calendar of Hope. Patients can also access resources through Gilda’s Club and other brain tumor groups.

What new therapies are available or being researched for patients with cancer?

From a psychiatric perspective, cognitive behavioral therapy and mindfulness therapy are helpful to coping with a brain tumor. There is current research on meaning-centered therapy, which helps with legacy building and defining goals, especially with a terminal or incurable cancer diagnosis. Biofeedback techniques are on the rise, as are complementary therapies such as acupuncture, massage, aromatherapy and others. There is a lot of hope for future treatments given the amount of ongoing research in this area.

The post The other brain cancer treatment: Helping patients through a difficult prognosis appeared first on Norton Healthcare.

“I couldn’t stand that she was there by herself, so I took the afternoon, and I sat with her,” said Kellie, who is the brain tumor patient navigator for Norton Cancer Institute. “We talked about everything except brain surgery.”

Providing brain cancer support and connecting patients to resources

Kellie provides long-term support to patients diagnosed with brain cancer, often getting involved at the very beginning of a diagnosis and seeing patients through treatment and recovery. She also supports family members and caregivers, who sometimes must change their lives in order to care for their loved one.

“Brain tumor patients often need a lot of support due to potential cognitive or physical limitations, so their family is heavily involved,” Kellie said. “I help coordinate patient appointments with the right physicians, alleviate any concerns and answer questions patients or family members have. Norton Cancer Institute offers other support services for patients and their families, such as social workers, dieticians and behavioral oncologists.”

According to Kellie, behavioral oncologists help care for the emotional and mental health needs of brain cancer patients.

“Brain cancer is such a devastating diagnosis, so we feel everyone should be assessed by a behavioral oncologist,” Kellie said. “Sometimes patients may use this therapy to help guide them through telling their family about their diagnosis. Family members can also use this service, either with the patient or individually.”

Related Content: Understanding astrocytoma and glioblastoma brain tumors

Kellie also educates patients about what their brain cancer or brain tumor diagnosis means, or what to expect from brain surgery.

“I love to educate and teach,” Kellie said. “As nurses, education is one of our biggest roles. There’s a moment to teach every time we interact with patients.”

Caring for adults with brain cancer: Finding a home with the brain tumor team

Kellie spent many years of her career caring for children at Norton Children’s Hospital. When she decided she wanted a new challenge, she found she hit it off with the physicians and adult patients at Norton Cancer Institute.

“Taking care of adults is just like taking care of kids,” Kellie said. “Adults need their hand held, their questions answered, and to be nurtured and taken care of. The rewarding thing about adult patients is that they can verbalize their appreciation a lot better than kids.”

Despite the heartbreak that sometimes comes with working with brain cancer patients, Kellie is grateful for her team and proud of the amount of time and care given to patients by their physicians, nurses and other providers.

“When you deal with oncology, you have to be positive,” Kellie said. “Many of our brain tumor patients have an incurable diagnosis, so we focus on what we can give them, which is time and quality of life. We let them know there are other treatment options, and if one doesn’t work, we can try something else. The most important thing we give them is control over the decision-making in their journey.”

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Rep. Kim King has represented central Kentucky’s 55^th District for almost a decade. She knows the halls of the state Capitol by heart and has cast hundreds of votes on the House floor. But this year’s legislative session takes on a different meaning for the Harrodsburg, Kentucky, native. Just four months ago, she learned that a rare, life-threatening tumor had overtaken 90 percent of her cervical spinal cord.

Kimberly first noticed an issue about five years ago.

“My family and I went out on our farm to shoot pistols, and I couldn’t pull the trigger,” she said. “Everyone else could, but my fingers just wouldn’t work.”

The issues slowly progressed. Kim started to develop tingling in her fingers and a burning sensation in her shoulders and neck. Eventually, she couldn’t open the door of their John Deere tractor — her fingers just couldn’t grab onto the handle. By last summer, she was having significant pain and lost a lot of feeling in her extremities.

“I really thought I had a pinched nerve,” she said.

A Stroke of Good Timing

Kim’s husband, Cary, underwent back surgery in October 2018. On Nov. 1 — less than a week before Kim’s re-election — she and Cary visited Charles H. Crawford, M.D., orthopedic spine surgeon with Norton Leatherman Spine, for Cary’s follow-up. Kim mentioned her own pain and numbness to Dr. Crawford, who ordered an MRI.

What came back wasn’t a pinched nerve. It was a massive tumor.

“I could tell by the concern in Dr. Crawford’s voice that something was really wrong,” Kim said.

Dr. Crawford referred Kim to his colleagues at Norton Neuroscience Institute. She initially met with David A. Sun, M.D., Ph. D., a brain tumor specialist, who subsequently referred her to Mahan Ghiassi, M.D., a spinal oncology specialist.

Dr. Ghiassi reviewed Kim’s MRI with his co-surgeon and brother Mayshan Ghiassi, M.D., also a neurosurgeon at Norton Neuroscience Institute. The scan showed she had a tumor growing inside her cervical spinal cord.

“It’s one of the larger spine tumors I’ve seen in this area,” Dr. Mahan Ghiassi said.

Intramedullary spinal cord tumors are rare — they make up less than 1 percent of all central nervous system tumors. Depending on the type, intramedullary spinal cord tumors can be benign or malignant, but both can lead to paralysis or death given the location. As the tumor grows, the patient eventually becomes paralyzed. If the tumor is untreated, the person will lose the ability to breathe. The only effective treatment is surgery to remove the tumor.

“Spine tumors often take time to diagnose, because back and neck pain is often caused by other factors, and people deal with it for years,” Dr. Mahan Ghiassi said. “By the time we saw Kim, paralysis was a real threat. We needed to act quickly.”

No Time for a Victory Celebration

On Nov. 1, Kim was diagnosed. On Nov. 6, she won her fifth term as a state representative. On Nov. 13, she was at Norton Brownsboro Hospital ready to undergo surgery.

It wasn’t an easy decision to make.

“I approached the decision to have surgery like I do a bill on the House floor,” Kim said. “I research, pore over the details and, above all, pray. Plus, it didn’t hurt that Dr. Ghiassi was very thorough in explaining my options and answering my questions.”

To perform the seven-hour microsurgery, Drs. Mahan and Mayshan Ghiassi used intraoperative navigation and intraoperative continuous spinal cord monitoring, a new technique which is only used by a few hospital systems across the country. Intraoperative monitoring allows surgeons to receive real-time analysis of spinal function during the procedure. This allows them to be more aggressive in removing the tumor without hurting healthy parts of the spinal cord.

“Given the complexity and high-density vital neural tissue within the spinal cord, sub-millimeter precision can mean the difference between a successful surgery and paralyses,” Dr. Mahan Ghiassi said.

The surgery was a success. Drs. Ghiassi removed the tumor, and Kim left the hospital after five days. Intense rehabilitation followed.

Back to Representing the People

Kim now begins her days with physical and occupational therapy and then spends the afternoon reviewing bills, casting votes and meeting with constituents in Frankfort. She’s regaining the feeling in her arms, and her strength is returning. And though she still has to work on some motor skills like dialing a cellphone or brushing her hair, Kim and Drs. Ghiassi are confident she’ll fully recover.

“I’m so glad to be back at work and representing my district,” Kim said. “This is what I was meant to do, and people on both sides of the aisle have been very supportive.”

Faith in Doctors and a Higher Power

Kim is a person of faith and truly believes God works in mysterious ways.

“Had it not been for the perfect timing of my husband’s surgery, my comment to Dr. Crawford and his connection with the Norton Neuroscience Institute, who knows what would have happened to me,” she said.

But she knows her faith in her doctors also paid off.

“My experience with Norton Healthcare has been wonderful,” she said. “Everyone was so detailed and compassionate. In fact, since my surgery, my husband and I have recommended Norton to a half-dozen folks in Eastern Kentucky. It’s worth the drive.”

For Dr. Mahan Ghiassi, the admiration is mutual.

“Kim is amazing and has worked very hard to recover,” he said. “I’m so happy that she can return to work and continue to serve the citizens of Kentucky.”

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