He was prescribed antibiotics, but his symptoms worsened. When Craig began to pass blood, his wife insisted that they drive straight to Mayo Clinic in Rochester — about an hour and a half away. There, Mayo Clinic physicians diagnosed him with metastatic urothelial cancer, or bladder cancer, which had spread to his spine.

Craig recalls receiving a phone call late that night from his Mayo Clinic doctor, who asked him if he wanted to just maintain his health for a few years or cure his cancer.

"I said, 'I'd like you to cure it,'" says Craig.

Seeking a Cure

Craig’s father had been a farmer, which was Craig’s dream too. But his father suggested he gain additional skills to supplement his farming income. Following his father's advice and encouragement from his high school welding teacher, Craig pursued his teaching certificate in welding. What he initially thought would be five or six years of teaching turned into a 45-year career developing welding programs at several local schools while also raising cattle and growing soybeans and corn on his 2,000-acre farm. Through his welding programs, he has trained several welders now employed by local manufacturing companies.

After his diagnosis in 2023, Craig took a hiatus from teaching and farming to focus on his cancer treatments at Mayo Clinic Health System in Mankato, which included chemotherapy, radiation and immunotherapy.

Metastatic urothelial cancer that has spread beyond the bladder usually is considered incurable and inoperable. However, Craig responded well to chemotherapy and radiation to his spine, which made his oncologist, Jacob Orme, M.D., Ph.D., and urologist, Paras Shah, M.D., consider Craig for a new surgical approach to treatment.

Craig proceeded with the proposed surgery and had his bladder, prostate and 36 lymph nodes removed.

"In Mr. Smith's bladder, we found viable cancer cells that would have led to a relapse. Now, however, he is nearly two years from diagnosis and remains disease-free," says Dr. Shah.

Craig’s positive response to treatment and surgery has spurred a clinical trial testing this aggressive approach in other patients with bladder cancer. Currently, 17 participants are enrolled, and the results so far have been promising.

A Path Forward

Advances in cancer treatment, such as immunotherapy that harnesses the body's immune system to fight cancer and the identification of biomarkers in the blood or urine that show how well a patient is responding to treatment, are helping the physicians select who will benefit most from surgery.

"The impetus for this study is to attack the cancer from multiple approaches, including treatments that cover head to toe and treatments that are directed right at the source tumor," says Stephen Boorjian, M.D., who is the David and Anne Luther Chair of Urology at Mayo Clinic and a lead proponent of the study.

"We want to remove the root of the cancer after we've burned off the leaves," adds Dr. Orme.

A team of researchers, physicians and clinical trials staff expedited the clinical trial through an accelerated pathway called a Rapid Activation Trial. It's part of a larger effort at Mayo Clinic to launch new clinical trials swiftly and effectively.

"Shortening activation timelines allows us to make a difference to more patients and their families," says Michelle Monosmith, Mayo Clinic Office of Clinical Trials operations administrator.

The study is supported by a generous gift by Ronald J. and Carol T. Beerman to Mayo Clinic. Dr. Boorjian and Elisabeth Heath, M.D., chair of Oncology, are prioritizing this effort to achieve more cures for men and women with bladder cancer.

"Our only goal is to help our patients live better and longer," says Dr. Orme.

That's what Craig plans to do as he continues to farm, teach and spend time with his family.

A version of this story was published on Mayo Clinic News Network.

The post Farmer Inspires New Potential Bladder Cancer Treatment appeared first on Mayo Clinic Magazine.

With her plans for her future pushed aside, Brescia's focus was now on her health and hope. It's an unexpected chapter facing an increasing number of adolescents and young adults diagnosed with cancer.

Brescia's Dream

At 4 years old, it was clear Brescia had a flare for creativity. She readily admits she was never one to miss an opportunity to play dress-up, draw pictures or tell a story. 

"Being creative has always been at the core of what I do," she says. Early on, she developed a love for photography and videography. Brescia's dream was to pursue a career that allowed her to put her creative energy to work. 

After high school, Brescia's passion led her to college to study film and media production. She even traveled to Italy to study abroad. After her Italian adventure, Brescia returned to the U.S. to finish college. First, she went to her doctor for her annual checkup. 

 "I lived a really healthy, balanced lifestyle," says Brescia. "My doctor found swelling on the side of my neck. I hadn't noticed the swelling and didn't have any symptoms." Brescia was sent for an ultrasound followed by a surgical biopsy. 

The Diagnosis

The surgical biopsy revealed Brescia had Hodgkin lymphoma, a rare type of blood cancer. "Being diagnosed with cancer at 20 years old was so scary, and I wouldn't wish that on any 20-year-old," says Brescia. "I think about the young version of me who just found out she had cancer, and I just wish I could give her a hug." 

Hodgkin lymphoma is a type of cancer that begins in the lymphatic system, which is part of the immune system. Brescia says the news came as a shock because she felt healthy and had no family history of cancer. "It felt like there was something I could have done to prevent it, but I learned that there's nothing I could have done," says Brescia. 

Navigating Life With Cancer

"When I was going through college and diagnosed with cancer, it was not what I was expecting," says Brescia. "Being a young adult with cancer was very hard and challenging. It is scary and can be very frightening." 

At 20 years old, Brescia falls into a group of patients referred to as adolescents and young adults (AYA) with cancer. AYA patients are between the ages of 15 and 39. Experts say AYA patients face a distinct set of challenges. 

"One of the reasons this age group is so important is based on their life stage — the things they uniquely face, like body image, disruption in school and work, financial challenges, feeling isolation," says Allison Rosenthal, D.O., with the Mayo Clinic Comprehensive Cancer Center. 

Doctor and Cancer Survivor

Dr. Rosenthal knows firsthand the challenges AYA patients face. "I had leukemia in medical school. There were a lot of missed opportunities in my care to recognize the issues that I might face as a 24-year-old woman," explains Dr. Rosenthal. 

Putting her experience into action, Dr. Rosenthal championed Mayo Clinic's Adolescent and Young Adult Cancer Program. The program is tailored to meet the unique needs of AYA patients to include medical care, fertility concerns, social and relationship issues, school and work concerns, and the personal and emotional impact of cancer in this age group. 

Brescia underwent about four months of chemotherapy treatment under the care of Dr. Rosenthal. "She did a beautiful job of explaining to me what the process was going to look like and what my treatment plan was going to look like. Because I'm so young, she walked me through the whole process," says Brescia.

Cancer-Free and Focused on the Future

After her cancer treatments, Brescia returned to college and got her degree. She started her own marketing agency providing social media management, videography, photography and brand development with her personal creative touch. She also celebrated her five-year anniversary of being cancer-free. 

"I also have a podcast called the Checkered Jaguar where I get to have incredible conversations with people, share their stories and connect people who may be going through similar challenges that I went through," says Brescia. "We're all in this journey together, and just being open and vulnerable with my journey — as challenging as it may be — I feel like it connects me to people all around the world." 

This article was originally published in Mayo Clinic Comprehensive Cancer Center Blog. 

The post Navigating Life as a Young Adult With Cancer: Brescia’s Story appeared first on Mayo Clinic Magazine.

Shraddha's Story 

It was November 2022, just a month shy of her 28th birthday. 

Shraddha was wrapping up another day at the medical clinic where she worked as an occupational therapist. Shraddha's job was to help patients regain the ability to perform day-to-day activities following a health challenge like surgery. 

Suddenly that afternoon, Shraddha became the patient who needed help. 

"My co-worker looked at me and said, 'Why is your hand all purple and blue?'" Shraddha says. She admits she had been feeling exceptionally tired as of late but attributed it to a thyroid condition. 

Her co-worker checked Shraddha's vital signs and found her blood oxygen level was dangerously low. "I remember her saying, 'If this is right, you wouldn't even be standing.'" A repeat test showed the same result. "The next thing I remember was we were on our way to the hospital," says Shraddha. 

At the hospital, doctors began looking for the cause of Shraddha's low blood oxygen level. A series of tests traced Shraddha's condition all the way back to the day she was born. 

"When I was born, doctors said I had fatty liver, but they didn't know why so they called it 'undiagnosed,'" says Shraddha. "The doctors thought it wouldn't be a problem because the liver has a tendency to heal itself." It didn't. Shraddha grew up seemingly in perfect health, unaware that her liver disease was silently doing damage to her body. 

A Little Girl With a Big Dream 

Shraddha was born in Mumbai, India, which is often called the "City of Dreams." At a young age, Shraddha had big dreams of her own. She wanted to pursue a career in the medical field that would allow her to help others. 

Every year, Shraddha went to the doctor for her routine physical. Each time she was given a clean bill of health. "I used to do blood tests, but everything always looked good," says Shraddha. Still, the question of what caused her congenital liver condition lingered in her mind. 

"I didn't have a family history of any liver condition. I've never had alcohol in my life," says Shraddha. "There was always a question mark. I needed to find out why this happened to me." 

At 23, Shraddha became the first person in her family to leave India and go to the U.S. to attend college. She studied occupational therapy and got her master's degree at the University of Southern California. After college, Shraddha found her dream job at a medical clinic in California. 

'Less Than a Year to Live'

All was going well until Shraddha began to notice she was unusually tired. "When my sister came to visit, she noticed I got tired after walking short distances. I went to the doctor, and they thought maybe it was my thyroid," recalls Shraddha. 

Then came the day her hands turned purple and her blood oxygen level mysteriously dropped. "My co-worker is a nurse so she got the oximeter and checked and it was 78%," says Shraddha. "And I was like, ‘No, that's not possible because I wouldn't be alive.’" Shraddha's co-worker checked again, looked at the reading and said, "That's it, you have to go to the hospital." 

A series of tests at the hospital revealed shocking results. Shraddha's liver condition had silently led to a more serious condition called hepatopulmonary syndrome.

Hepatopulmonary Syndrome 

Hepatopulmonary syndrome is caused when liver disease shunts blood away from the lungs, preventing the body from getting the appropriate amount of oxygen. Doctors told Shraddha the only way she would survive is with a liver transplant. However, she says she was told her condition was so severe and the risk so high that she would likely not survive a transplant. 

She was denied the transplant and given less than a year to live. 

"I told the doctors, 'That just can't be. I can't have just one year with nothing to bring to this world. I have not served my purpose,’” recalls Shraddha. 

Refusing to give up, Shraddha turned to Mayo Clinic in Arizona. 

"More than 40% of her blood was being shunted away from her lungs. Because of that, she had extremely low oxygen levels in her blood," explains Bashar Aqel, M.D., director of the Transplant Center at Mayo Clinic in Arizona. "Shraddha's case was one of the most severe cases of liver disease and hepatopulmonary syndrome." 

Saving Shraddha 

The liver transplant was Shraddha's only hope for survival. "Without a transplant, this disease was progressive and fatal. We don't like to use this word, but it is a very progressive disease," says Dr. Aqel. "There was no other cure than a liver transplant." 

Dr. Aqel and his multidisciplinary team of experts at Mayo Clinic went to work on a strategy to save Shraddha. The team came up with a plan using a combination of some of the latest cutting-edge technologies in medicine. 

‘Liver in a Box’ 

Transplanting any organ is a race against the clock. Every second the donor organ is outside the body, it begins to break down. Surgeons only have a limited time window to transplant the organ. Due to the complexity of Shraddha's case, Dr. Aqel's team knew they would need extra time. They decided to use one of the latest medical breakthroughs in transplant often referred to as "liver in a box." 

Traditionally, donor organs are kept cold until transplanted. "Liver in a box" uses a warm organ preservation method. The organ is placed in a container that pumps oxygenated, nutrient-rich blood through the liver, simulating conditions in the human body. The innovative perfusion system gives surgeons more time to perform the transplant. 

"Having the ‘liver in a box’ allowed the donor liver to stay healthy while we performed this complex surgery," says Dr. Aqel. 

Currently, this warm perfusion technology is primarily being used for heart, lungs and liver transplants.

Saving Lives With Mobile ECMO 

The next challenge was how to keep Shraddha's blood oxygen levels stable after her transplant. Dr. Aqel's team turned to a device called extracorporeal membrane oxygenation, or ECMO. The device often is used when the lungs aren't working properly. ECMO helps with the appropriate gas exchange that must occur to keep the body's blood oxygen level safe. 

"It helps in getting oxygen into the blood and carbon dioxide out of the blood through the machine," explains Ayan Sen, M.D., medical director of Mayo Clinic's Intensive Care Unit in Arizona. "It helped us while her lungs recovered after her transplant." 

The Mayo team also used one of the newest advancements in ECMO where the device is mobile. 

"The best part of the mobile ECMO was that we do it in a way where she could actually walk around with the machine so that we could continue with her physical therapy, which is so important for the healing process after such a complex surgery," says Dr. Sen. 

Shraddha was in the ICU for nearly two months. With mobile ECMO, she walked nearly every day. 

Dr. Sen says mobile ECMO has proved to be a game-changer in critical cases like Shraddha's. 

"It is technology that has really expanded  what surgeons do when they do heart surgeries and transplants, where now we can do this to save lives at any place that is not a complex environment, like the ICU or the operating rooms," explains Dr. Sen. 

Mobile ECMO has become a lifesaving medical breakthrough for many patients. 

"It has enabled us to raise the bar when it comes to saving people, who, until now, could not have been saved in the absence of this heart-lung machine," says Dr. Sen. 

A team of highly specialized experts escorted Shraddha on her daily walks, meticulously monitoring her vital signs. Each step required Shraddha to muster every bit of strength she had. 

"From the first day, I thought even if it pains me, if it hurts, even if it feels impossible, I still need to put that step forward to do something better today than yesterday," recalls Shraddha.

'Mayo's Mission Is Now My Purpose' 

Almost two years after her harrowing experience, Shraddha is healthy and back at work. She continues her daily walks, only now at the beach, in solitude, reflecting on how her own experience can make her a better healthcare professional. 

"Mayo Clinic doesn't like to say ‘no.’ They set out to achieve the unachievable," says Shraddha. "My goal is to treat patients as they do, making them a priority." 

Shraddha says words of thanks alone are not enough to convey her gratitude.  

"Dr. Aqel and his team achieved something for me that everyone else thought was impossible," says Shraddha. "It was a gift. I will keep the mission of Mayo Clinic in mind when I am serving my patients. My purpose now is to put forward their purpose and help someone else."

This article was originally published in Mayo Clinic News Network. 

The post Harnessing the Power of Innovation and a Patient’s Will to Survive appeared first on Mayo Clinic Magazine.

Oliver is remembered for his infectious smile and the love and resilience he radiated to all who knew him, even from the intensive care unit. Born with a rare and incurable genetic epilepsy disorder, he inspired a pioneering program designed to expedite genomic-related diagnoses and enhance definitive patient care. 

"Oliver's life was a brief gift, but he left a mark deeper than his time with us," says his mother, Justine Bates, sitting in the comforting glow of purple lights in honor of her baby boy. Those lights, adorning the windows and a memory tree in her Minnesota home, symbolize epilepsy awareness. Close to her heart, Justine has a tattoo of Oliver's small handprint. 

Oliver's father, Casey Bates, will always remember the quiet evenings spent holding his son after work. He proudly displays his own tattoo that reads "Seize the day," a subtle nod to his son's seizure condition and a reminder to cherish every day. 

"He loved to laugh, and he had the best facial expressions. He was my snuggle bug," Casey says. 

Oliver’s Diagnostic Journey 

Oliver's health journey began when he was just 5 weeks old, when his first seizure led his parents to rush him to a local emergency room. 

The complexity of his case and the initial hospital's difficulty in diagnosing him led them to transfer Oliver to Mayo Clinic for specialized care. At Mayo, Oliver underwent a comprehensive series of tests, including exome sequencing, which specifically examines 20,000 protein-coding genes where many diseases originate. Although this sequencing technique can provide crucial insights into rare conditions, it can require time for detailed analysis and interpretation of the results. 

While Oliver's initial tests did not reveal the cause of his ongoing seizures, the exome sequencing — which took nearly a month to process — finally helped his care team diagnose Oliver's condition: a rare form of epilepsy known as WWOX-related epileptic encephalopathy (WOREE syndrome). Although the diagnosis helped his care team guide Oliver's care, the condition currently has no cure. He passed away on March 10, 2022, surrounded by his loved ones.

A New Era in Genomics 

Rare diseases affect 300 million people worldwide, yet only about 25% of patients ever receive a diagnosis, and often that diagnosis has no available treatments. 

Recent advancements in genomic technologies are beginning to offer a glimmer of hope. Clinicians are using these cutting-edge tools, which leverage artificial intelligence (AI) to scour volumes of data, transform diagnostics, and make it possible to identify and understand rare diseases more quickly and accurately than ever before. This is opening avenues for the development of more treatments. 

Inspiring Genomic Advances 

Witnessing firsthand the critical need for such advancements, Whitney Thompson, M.D., a key member of Oliver's care team, felt compelled to act, moved by Oliver's family's wait for a diagnosis. With support from the Department of Pediatric and Adolescent Medicine and the Center for Individualized Medicine, she launched an ultra-rapid whole genome sequencing program in Mayo Clinic's neonatal intensive care unit (NICU). 

In this pioneering program, which is a collaboration with Rady Children's Institute for Genomic Medicine in San Diego, California, clinicians use new sophisticated technology and AI to sequence a patient's 3 billion DNA base pairs in approximately 48 hours. This comprehensive analysis can identify even the most subtle genetic variants, though it may not always lead to a diagnosis. 

"Rapid diagnoses can lead to lifesaving treatments in some cases, and while not every rare disease has a treatment, every diagnosis brings crucial information that can guide medical decisions and help families anticipate what’s next," says Dr. Thompson, who is completing her fellowship training in neonatal medicine, clinical genomics and bioethics as part of the Clinician Investigator Training Program at Mayo Clinic. 

Oliver's life was a brief gift, but he left a mark deeper than his time with us.

— Justine Bates

Under this program, through the Mayo Clinic Department of Clinical Genomics with Brendan Lanpher, M.D., as practice chair, infants and children admitted to Mayo Clinic's Eugenio Litta Children's Hospital in Minnesota undergo ultra-rapid whole genome sequencing if they meet specific criteria. 

The program, launched at Mayo Clinic in June 2022, has since been expanded to some adults who exhibit symptoms suggestive of genetic disease, enabling them to receive the same rapid, comprehensive DNA analysis. To date, more than 300 infants, children and adults have been offered whole genome sequencing. 

Dr. Lanpher hopes the program will open the door to more patients having access to comprehensive genetic testing. 

"This is the future of medicine," Dr. Lanpher says. "I believe there are many patients with unrecognized or undiagnosed genetic diseases, and by finding and testing these patients early in the course of symptoms, we'll have the best chance at making a difference, finding a treatment and avoiding a diagnostic odyssey." 

Introducing BabyFORce 

Achieving a precision diagnosis is just the first step of a broader goal. Dr. Thompson and her team also have their sights set on rapid individualized therapeutics. She is collaborating with Laura Lambert, Ph.D., director of the Mayo Clinic Functional Omics Resource (FORce), along with Eric Klee, Ph.D., the Everett J. and Jane M. Hauck Midwest Associate Director of Research and Innovation at the Center for Individualized Medicine, and Filippo Pinto e Vairo, M.D., Ph.D., director of the center's Program for Rare and Undiagnosed Diseases. 

Together, they have initiated a first-of-its-kind program called BabyFORce, which uses AI to help clinicians identify individualized therapeutics for some of the smallest and sickest patients with genetic diseases in the Neonatal Intensive Care Unit. 

"We’re tapping into an advanced AI platform that leverages a 'logic programming' approach, applying set rules to combine and analyze various biomedical data sources," says Dr. Lambert. "This could enable researchers to identify potential drug repurposing opportunities, generate hypotheses and uncover novel insights into disease mechanisms." 

She says the approach could also reduce the time and cost associated with developing new therapies and provide hope for patients with limited treatment options. 

Oliver's Impact

Oliver's impact extends beyond medical advancements. As his care unfolded during the challenging times of COVID-19, he also inspired Mayo's pediatric palliative care team to start a tele-hospice program. This ensured that children in hospice care could continue to receive compassionate support remotely. 

"All of the providers who cared for Oliver learned so much from him and his family, including how helpful it was to have real-time video assessment of patients with challenging pain and symptoms during in-home hospice visits by nurses," says Christopher Collura, M.D., the medical director of Pediatric Palliative Care (ComPASS) at Mayo. "This inspired our team to formalize a tele-hospice program in order to streamline assessments by pediatric palliative medicine physicians for children enrolled with Mayo Clinic Hospice." 

Honoring Oliver and Welcoming His Baby Sister 

Throughout Oliver's life and even in his final hours, Dr. Thompson and her team formed a tight, supportive relationship with Oliver and his family, providing comfort and care when it was most needed. 

"Dr. Thompson was really there for us during the hardest time of our lives. And she has continued to support us after Oliver's death," Justine says. "Every year she joins us to honor his memory at our balloon release on Oliver's birthday." 

The Bates family also reached out to Dr. Thompson for guidance on the potential for having another child. 

WOREE syndrome, the genetic condition that affected Oliver, is a recessive disorder. That means both parents carry a copy of the mutated gene but usually show no symptoms. Each pregnancy has a 25% chance of the child inheriting two defective genes — one from each parent — which leads to the disease. Using these genetic insights, Dr. Thompson helped guide the Bates family to the subspecialists who helped them choose a plan that would increase the likelihood of a healthy pregnancy unaffected by the same genetic condition that Oliver had. 

In May, Oliver's legacy was further celebrated with the birth of his baby sister. Justine and Casey named her Whitney, in tribute to Dr. Thompson, reflecting their deep gratitude for the care and dedication Dr. Thompson gave to Oliver and their family. 

"I am deeply touched by this gesture," Dr. Thompson says. "Oliver's story shows us that new beginnings can coexist with cherished memories to help provide healing and comfort."

This article was originally published in Mayo Clinic News Network. 

The post Baby Oliver Leaves Legacy of Genomic Advances at Mayo Clinic appeared first on Mayo Clinic Magazine.

A Promise Delivered: A New Heart for a New Mom

Promise Garell grew up with a congenital heart defect. She was born with transposition of the great arteries, where her heart vessels and her heart were not correctly transfigured, preventing her heart from providing adequate blood flow to the rest of her body. Her first surgery to address this was at 3 days old. Throughout her formative years, she says her childhood was normal. She was active and even played sports. 

"I was fine until I was probably 8 years old, when the symptoms started," says Promise. "At the time, I was having signs of a heart attack, but it was because my troponin levels were elevated. This would happen sporadically when I was working out or playing softball." 

It would be another seven years before Promise would receive open-heart surgery to address these issues. "I think I was 15, and finally, after about seven years of having these issues and being in and out of the emergency room undergoing constant testing, I received an invasive procedure that lasted about 5 ½ hours," says Promise. "Luckily, after that surgery, I was pretty healthy." 

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In 2020, she married her husband, Andrew, who serves in the Navy. By early 2022 at age 24, Promise received the exciting news that their family was growing. She was expecting their first child. About six months into her pregnancy, she began to struggle. The toll of carrying a growing baby led to complications during her pregnancy, including congestive heart failure. 

"I was fine for the first couple of months, and then the third trimester came, and my body could not handle the fluid shifts," says Promise. "Due to that, I ended up in cardiogenic shock, which is pretty much where your whole body is just shutting down because your heart is no longer perfusing like it's supposed to." 

Promise's son, Paxton, was born 11 weeks early in June. He spent two months in a neonatal intensive care unit. Throughout this time, Promise's health continued to decline due to heart failure. She would spend time in and out of several hospitals as teams tried to determine the best course for her care. Ultimately, Promise and her family made the decision to transfer her care to Mayo Clinic. 

New Heart, New Lease on Life 

In early September 2022, Promise arrived at Mayo Clinic in Florida. She says that throughout her life she always kept Mayo Clinic in the back of her mind as one of the top healthcare institutions she would use in the event of an emergency. 

"As a congenital heart defect patient or someone with lifelong heart issues, you always keep in mind the right places to go just in case something happens," says Promise. "And luckily, it worked in my favor." 

Thanks to a timely military transfer, stationing her husband at Naval Air Station Jacksonville, Promise was now close enough to the healthcare institution she often thought about throughout her health journey. "The Navy definitely got us where we needed to be at the right time," says Promise. 

Doctors immediately knew Promise needed to be transferred to the ICU, where temporary pumps and medication helped keep her alive until her care team could figure out if she was a candidate for a transplant and if she would survive one. 

"When we met Promise for the first time, we realized she was probably one of the sickest patients that we would encounter," says Rohan Goswami, M.D., a transplant cardiologist at Mayo Clinic. "It was clear within minutes of seeing her she was going to need to be transferred to the ICU. We had a new mother really working to survive to take care of her family." 

Two days after arriving, she was added to the heart transplant waitlist. 

"I knew the doctors were going to do what they needed to get me on the list, to get me a heart," says Promise. "I think them knowing that I had a 3-month-old son was just as much a motivation for them as it was for me." 

Seeking a plan on how to transplant Promise's heart, the team needed more information about the vessels in her heart. "We needed to have a game plan for how we were going to take the heart out, what type of heart we were going to accept, and how we were going to implant it," says Parag Patel, M.D., a transplant cardiologist at Mayo Clinic. 

3D technology emerged as the solution. Given the complexity of her situation, surgery would not have been possible without a 3D rendering for planning. The 3D team received the request from Promise's transplant team, and within 24 hours, they were able to research, design and deliver. 

"Through a multidisciplinary fashion with our heart transplant team, critical care team, cardiothoracic team and cardiac anesthesia, we were able to work together to find out what things would prevent us from being successful with her care," says Dr. Patel. "It became very evident that in order to optimize her care, we needed to know what we were getting into, how her heart position was actually related to her chest wall, and how her vessels were within her chest. So we reached out to our 3D printing team and our 3D reconstruction team and asked them to reconstruct Promise's heart."  

The 3D renderings helped the team to quickly establish a game plan. The surgeons were able to reference the model in the operating room even as they performed her procedure. 

When listed for her transplant, Promise's team decided to employ a strategy for a donation after cardiac death heart using ex vivo perfusion, also known as "heart in a box." This allowed the heart to beat while being transported from the donor center and thereby allowed physicians to monitor the donor heart closely to ensure it was stable before the transplant.  

Her doctors say both hearts — her "original" heart and the donor's heart — were beating simultaneously in the same room prior to the start of the procedure. Organ perfusion systems, such as "heart in a box," have allowed for increased use of donation after cardiac death, where the heart stops beating. Once the heart is reanimated, the function of the organ is assessed for transplant. The system allows the organ to stay warm and metabolically active, extending the time between retrieval and transplant by several hours. 

Promise's new heart came from a hepatitis C-positive donor. In an effort to expand donor pools, organs that previously would have been discarded are now saving more lives thanks to a new generation of highly effective antiviral medications that allow for safe transplantation. After the transplant, patients begin antiviral treatment that will eliminate the virus. 

"Because of the collaborative approach and high level of communication with each of the members of our multidisciplinary team, we were able to take separate pieces of technology and cater our therapies and tailor it for Promise," says Dr. Patel. "The biggest thing to understand is when we have technology, it provides us more knowledge than what we had a year ago. And taking that technology and taking that knowledge is imperative for us to identify, No. 1, how can we do better for our patients? And No. 2, how can we prevent problems for our patients? And most importantly, how can we do things now that we could not do a year or two ago?" 

Promise’s New Heart 

Promise received her new heart on Sept. 15, 2022. She has since celebrated many milestones, including her son's first birthday, her 25th birthday and her first transplant anniversary. 

"When you come to Mayo Clinic, they care," says Promise. "They want to make you better. They will do whatever it takes to make you healthy, and I am forever grateful for that. Being on that table as a new mom, as a wife, a daughter, I think the biggest thought was I had to pull through this surgery for my son — if not for myself, my husband, my mom and my brother — for my son. My son needed me." 

This article was originally published in Mayo Clinic News Network.

The post A Promise Delivered: A New Heart for a New Mom appeared first on Mayo Clinic Magazine.

Falling behind her siblings was an early sign of the condition that would soon shape her life. "I remember running after my brothers and I couldn't keep up. Then I would turn blue,” she says. 

Unfortunately, she wasn’t the only one in her family with heart problems. By her early teens, Kataliya experienced the devastating death of her younger sister, who passed away suddenly from a heart condition — a loss that underscored the urgency of Kataliya's own. From then on, her life became one of medications and caution, aimed at keeping her alive. 

Despite these efforts, Kataliya’s health began to decline in 2020. "I felt like I was suffocating," she recalls. That led her to Mayo Clinic, where she worked with transplant cardiologist Rohan Goswami, M.D., to find a lasting solution. 

Defying the Odds 

Kataliya had a difficult journey ahead of her. According to Dr. Goswami, the challenge in her case was twofold. First, she had a specific heart condition, hypertrophic cardiomyopathy, that elevated the risks associated with using any support devices. Additionally, she had a high level of antibodies in her bloodstream, further complicating her situation. 

“I came in at 97% antibodies, which means my systems would fight 97 out of 100 hearts,” Kataliya says. “Basically, I had a very small chance they could find a match [for a transplant]. How could they find that one heart of millions that I would not reject?” 

The Future of AI and Transplants 

Artificial intelligence (AI) is emerging as a powerful ally in organ transplantation, paving the way for safer and more effective outcomes. "It takes lots of patients over lots of treatment pathways and helps us identify the best one for the person sitting in front of me,” Dr. Goswami says.

Kataliya’s case is a prime example. According to Dr. Goswami, AI added a new dimension in helping her medical team understand her risks and gauge her potential for a successful match before her transplant. But that’s only scratching the surface of AI’s transformative role in transplantation. 

"I think organ matching, patient survival and also looking at the ability to predict who's a high-risk or a low-risk patient are going to change the landscape of transplant in the next couple of years,” says Dr. Goswami. 

At Mayo Clinic, research is already underway to explore the full potential of AI’s capabilities in transplantation. Dr. Goswami explains that advanced algorithms are helping researchers “understand and identify the factors that may be playing a more significant role in a patient's risk for infection, cancer or rejection” — insights that extend far beyond the traditional models clinicians have relied on for over 20 years. 

"We are using AI to redefine our understanding of chronic disease, potentially preventing the need for organ replacement therapy altogether,” he says. 

Living Life Out Loud 

On June 6, 2023, Kataliya got her perfect match. 

After receiving her life-changing transplant, she could, as she puts it, finally start "living life out loud." She even began running — an achievement that had previously seemed completely out of reach. "It feels very powerful," she says. 

We are using AI to redefine our understanding of chronic disease, potentially preventing the need for organ replacement therapy altogether.

— Rohan Goswami, M.D.

For Kataliya, AI was more than just a technology — it was a lifeline. Thanks to the power of AI and her team's experience, she’s living a life she once thought impossible. And for the future of transplant patients, AI offers the hope of a similar second chance.

The post AI’s Role in Kataliya’s Heart Transplant Journey appeared first on Mayo Clinic Magazine.

Time Is Brain

In stroke care, time is brain.

From the moment a stroke begins until clinicians have restored normal blood flow in the brain, the clock is ticking. Every minute can mean the death of millions of neurons — our brain’s fragile, critical cells that control our every function. But it takes time to determine if a patient is experiencing a stroke and, if so, what kind of stroke they are having, before any treatment can be given. When it comes to improving stroke care, anything that can speed up the process of identifying and addressing the condition can have an enormous impact on patient recovery.

Enter: Artificial intelligence (AI). At Mayo Clinic, clinicians are using AI algorithms to speed up stroke detection and diagnosis and coordinate care teams to get patients the treatment they need sooner, saving millions of brain cells and improving patient outcomes.

A Ticking Clock

For Sophia Chan, that clock started ticking at approximately 2:05 on a Thursday afternoon in February 2022. It was just another day at her high-pressure job as a television producer when she began to experience a severe headache.

She explains that she doesn’t remember what happened that day — she only knows what she’s heard from her husband and the first responders. “Normally I would just go lie down for a bit and hope for the headache to go away,” Sophia says. “Apparently that day I did end up calling for help, and that’s what saved my life.”

By the time the first responders arrived just minutes later, she was unresponsive. She’d suffered a brain aneurysm while she was home alone. She was transported to Mayo Clinic in Jacksonville, just 15 minutes away.

While Sophia can’t remember anything from that day, her husband, Bobby Cullen, remembers it all in vivid, painful detail, recalling how he spoke to her just hours before a neighbor texted to ask about the ambulances outside their house.

He had been out of town for work, and it took him five hours to get back home. By the time he arrived, Sophia had already been in and out of surgery, and her status was still so tenuous that he wasn’t allowed into her room. He was finally allowed to see her in the earliest hours of the morning, when a clinician told him that it was time to say goodbye — Sophia wasn’t expected to survive for much longer. “I stood by her head for the next eight hours,” Bobby says. “The doctors tried to tell me to sit down, but I told them I wouldn’t sit down until she’d taken her last breath.”

Those eight hours turned into 36 hours, then 72. “On day 7, one of the doctors told me that I should go home and take care of myself,” says Bobby. Sophia continued to beat the odds, but she wasn’t out of the woods. It took almost three weeks for her care team to fully stabilize her condition. She can’t remember anything that happened during the first 21 days of her hospitalization.

Accelerating Diagnosis and Intervention

William Freeman, M.D., is focused on developing systems to better recognize and treat hemorrhagic strokes like Sophia’s, which are less common but often more debilitating than ischemic strokes. This is because ischemic strokes are the result of a blocked blood vessel, which leads to brain tissue injury as the cells are deprived of oxygen. Hemorrhagic strokes, caused by a ruptured blood vessel, result in rapid tissue damage as blood pools and increases pressure in the brain.

The treatments for the two types of strokes are different. Treatment for an ischemic stroke involves breaking up the blood clot, either with a medication or mechanically, so the blood can flow again. Hemorrhagic strokes are treated by providing medications to reverse any blood thinners the patient may be on, stop the bleeding, and relieve pressure on the brain to reduce tissue damage.

Knowing which kind of stroke a person is having is very important for choosing the right treatment. The wrong treatment could make a patient’s condition worse.

With the help of AI, a process that once could take half an hour or longer can now take just seconds. When a patient enters the emergency department with a suspected stroke, the first critical step is getting them a CT scan, generating detailed images of the patient’s brain using X-rays. Technicians then review the images looking for abnormalities in the brain to determine the location of the stroke and what type of stroke it is.

Now, an AI algorithm trained on a database of CT images from patients who have had strokes can rapidly scan hundreds of images and pull out the ones showing an abnormality. A technician reviews the relevant images and confirms the algorithm’s assessment. “A full CT and CT angiogram can be up to about 1,200 pictures,” says Dr. Freeman. “And before the software came into play, we’d be looking manually, slice by slice. It seems like it takes an eternity. AI can compress all those minutes down into seconds.”

After diagnosis comes intervention. Once the stroke has been located and clinicians determine its type, a care team is gathered to initiate the appropriate treatment. Dr. Freeman says AI can smooth this process too by sending automated messages to on-call clinicians as soon as a diagnosis is reached.

“Now, I’ll be in the CT control room, and while a technician is still processing the images, my smartphone pops up with a notification telling me that it’s go time,” he says. “It’s really a sight to behold.”

42 Million Neurons Saved With AI Intervention

30 MINUTES

Patient experiences ischemic stroke symptoms, such as slurred speech, numbness or weakness on one side of the body, or a sudden severe headache.

+20 MINUTES

EMT services are called for the patient, and patient is transported to hospital by EMTs.

+10 MINUTES

Patient arrives at hospital and is triaged in the emergency department. Care team suspects a stroke, and the patient is sent for a CT scan.

+10 MINUTES

Patient undergoes CT scan, and images are sent for review.

WITHOUT AI INTERVENTION

+25 MINUTES

CT images are manually reviewed by a technician to identify the stroke site and type. Care team is gathered to provide treatment. Patient receives treatment for stroke and begins the recovery process.

TOTAL TIME: 95 MINUTES

TOTAL NEURONS LOST: 180.5 MILLION

WITH AI INTERVENTION

+3 MINUTES

CT images are run through AI algorithm to identify stroke site and type. AI system alerts care team and directs them to the patient for treatment. Patient receives treatment for stroke and begins the recovery process.

TOTAL TIME: 73 MINUTES

TOTAL NEURONS LOST: 138.7 MILLION

The Difference a Minute Can Make

While AI tools have been well studied in ischemic stroke, they are less developed for use with hemorrhagic stroke, and that’s what Dr. Freeman wants to change.

“In a hemorrhagic stroke, patients get super sick, super fast,” he explains. “We estimate that patients lose between 6 million and 8 million brain cells per minute in just the first two hours. AI can help get patients out of the waiting room and into treatment much faster.”

Research has found that integrating AI into care for an ischemic stroke can save an average of about 22 minutes. With an estimated 1.9 million neurons lost during every minute of an ischemic stroke, this adds up to about 42 million neurons saved. With even more neurons lost per minute in hemorrhagic stroke, saving even just 10 minutes could have a dramatic impact on a patient’s recovery.

This technology, along with training and teamwork, is already having an impact in the clinic. “With AI implementation, we’re absolutely seeing a difference,” says Kacie Brewer, P.A.-C., who is a member of Sophia’s care team. “It’s getting patients the care they need faster by speeding up the diagnosis and pulling together the right team as quickly as possible.”

Sophia is acutely aware of the importance of those 10 minutes. Her proximity to Mayo Clinic and the AI algorithms that allowed the care team to find her aneurysm in minutes are likely the keys to her remarkable recovery. “I feel very fortunate to have been near Mayo Clinic,” she says. “The care I received was the best of the best.”

Her treatment at Mayo Clinic did more than just save her life. Many who survive hemorrhagic strokes go on to have significant lifelong disabilities. Two years after her stroke, Sophia is thriving, getting back to her active lifestyle of chasing around her sporty 9-year-old twins and easing into her yoga practice.

The family has moved to California to be closer to family, but still travels back to Jacksonville for follow-up visits.

Sophia’s case is remarkable because it’s still not yet the norm — most patients who suffer a hemorrhagic stroke do not experience a recovery like hers. Dr. Freeman believes that better AI algorithms and implementations, along with other cutting-edge technologies, can change that.

Sophia is now participating in the DISCOVERY study, a clinical trial leveraging Mayo Clinic’s expertise in neurology and neuroimaging to understand the risks of post-stroke cognitive impairment in diverse populations. She hopes that the research can lead to better outcomes for other patients like her.

And, every year, she and Bobby make a special effort to send treats and thank each of the doctors and nurses who provided so much of the care and support their family received during those first few impossible weeks.

“We really believe in Mayo Clinic’s values and mission,” says Bobby. “We could see how all of Sophia’s care was really a group effort, and it saved her life.”

The post Time Is Brain appeared first on Mayo Clinic Magazine.

From the day of her birth in April 2022, Makrii Omot has lived up to that name, amazing her multidisciplinary pediatric care team with her strength and determination.

Discovering Congenital Complications

From the start, Makrii needed those characteristics. At 28 weeks of pregnancy, Swina had an ultrasound that revealed something completely unexpected — abnormalities indicating that Makrii's diaphragm hadn't fully developed. The condition is called congenital diaphragmatic hernia (CDH) and occurs in about 1 in 5,000-8,000 births annually.

The diaphragm is a muscle separating the chest and the abdomen and is the primary muscle for breathing. If the separation isn't complete, organs from the abdomen can move into the chest, press against the lungs and affect their development.

Not only can this condition cause the lungs to be smaller and immature, but it also can lead to pulmonary hypertension, or high blood pressure, in the lungs. Both situations make it difficult for the baby to breathe after delivery and can increase the risk of severe decompensation (organ failure). A baby's chances of surviving with CDH are low unless doctors act quickly to correct the condition.

Creating a Working Diaphragm

After receiving the diagnosis at Mayo Clinic Health System in Austin, Minnesota, Swina and her family moved to Rochester to be closer to Makrii's pediatric care team.

Makrii was born at 36 weeks at Mayo Clinic in Rochester. To help her breathe, she was placed on extracorporeal membrane oxygenation (ECMO) by Cardiovascular Surgery.

At 1 day old, while Makrii was still on ECMO, D. Dean Potter, M.D., a pediatric surgeon, performed the first surgery to correct her CDH. The surgery involved shifting her abdominal organs back into place and covering the large hole (hernia) in her diaphragm with a synthetic patch.

"The hernia is relatively easy to repair, and the recovery for patients is fairly straightforward," says Dr. Potter. "But the real consequences of CDH are its effect on lung development."

Helping Makrii Breathe

For Makrii, those consequences were severe, resulting in tracheobronchomalacia (TBM), an airway disorder of the main bronchial tubes that causes them to be abnormally floppy. Even with sedation and maximum support from a ventilator, Makrii's trachea and airways tended to collapse, causing her oxygen levels and heart rate to drop.

"Makrii was very sick," says pediatric surgeon Stephanie Polites, M.D. "Tracheobronchomalacia can improve over time as the cartilage in the trachea strengthens, but Makrii's condition was so severe, we didn't have time to wait."

For her mom, Swina, and dad, Naney Omot, enduring the ups and downs of Makrii's condition was frightening and draining.

"We got to the point where we thought, 'Just let it be. If God wants her to be alive, she'll live,'" says Swina. "We knew she was in the best place, with the people who had kept her alive since she was born."

Crafting an Unconventional Solution

Dr. Polites quickly pulled together a team of Mayo Clinic experts from several specialties to find a solution for Makrii.

"She faced such tough odds but was so brave that she inspired the team to think outside the box. The surgical procedures that we perform more commonly for tracheomalacia wouldn't have been sufficient," says Dr. Polites.

"The full length of Makrii's trachea was floppy, and the bronchi on both sides were severely affected," says pediatric pulmonologist Paul Boesch, D.O. "Her airway was about the diameter of a pencil, and even providing structural support with an extra-long tracheostomy tube inside her trachea wasn't keeping it from closing."

The multidisciplinary team needed to find a solution that would support an airway segment longer than the trachea, including the bronchial tubes to each lung. They decided one potential option, inserting devices like stents inside the multiple small airways, wouldn't be effective and would cause other problems.

To provide maximum support of the trachea and main bronchial tubes without injuring Makrii's small airways, the team developed a plan to craft a customized external splint, like a partial cast, around the airway. To prevent collapse, they would stitch the trachea to the sternum in the front and the spine in the back.

Dr. Polites' team relied on Mayo Clinic's 3D Anatomic Modeling Laboratory to recreate Makrii's anatomy based on the results of pulmonary imaging. This 3D model allowed the team to better understand what would be needed during surgery.

"Combining these three procedures and the individualized approach to Makrii's complex anatomy made the surgery exceptionally innovative," says Dr. Boesch.

Assembling the Team for Surgery

Splinting of the trachea is a rare procedure performed at only a few hospitals in the U.S. Makrii would be Mayo Clinic’s first pediatric patient to undergo this operation.

On October 13, 2022, everyone was ready. Makrii was placed on ECMO again to support her heart and lungs during the complex surgery.

Dr. Polites molded warmed plates of bioabsorbable material to create the splints and then secured the splints around the front of Makrii’s airways. The splints would maintain the shape of the airways and keep them open, allowing Makrii to breathe easier. The surgery was successful, and Makrii began to improve almost immediately.

Breathing Easier, Growing Stronger

Today, Makrii is at home and doing well. Her parents and grandmother share care duties such as managing her feeding tube and tracheostomy. She is getting stronger every day and reaching developmental milestones. The supportive plates put in during surgery will be absorbed by Makrii's body over time as her airways become stronger.

"It was exciting, yet humbling, to work with such an exceptional team dedicated to getting Makrii better so that she could go home with her family, grow and develop," says Dr. Polites.

Thinking back on her choice of name for Makrii, Swina says, "I'm glad I kept 'Makrii' because she is strong. It matches how she is on the inside, the outside and how she will be as she grows."

This article was originally published in Mayo Clinic News Network.

The post Baby Makrii Breathes Easier After Innovative Airway Surgery appeared first on Mayo Clinic Magazine.

One day on the court in 2022, a seizure dropped 6-foot-8-inch Parker to the floor.

"The next thing I know, I'm lying down in the middle of the basketball court, and there's a stretcher coming to pick me up and [they] drive me to the ER," recalls Parker. "That's when it really hits that, no, we're not just done and out of this. Something really is going on."

That something turned out to be a skull abnormality called an encephalocele, which caused Parker to have seizures.

Three years after his journey with epilepsy started, Parker's seizures are in control, and he's enjoying new responsibilities at his job and shooting hoops again.

If sharing his experience could help someone else find answers, Parker is all in — especially as he's learned that encephaloceles are becoming more recognized as a cause of seizures. "If talking about this can help someone else, absolutely, without question," Parker says.

Re-Review of Imaging

There are distinct types and severities of encephaloceles. Some are present at birth and can be large. One in every 10,400 babies is born with this type of rare, large encephalocele, according to the Centers for Disease Control and Prevention (CDC).

Other encephaloceles, like Parker's, occur after birth when the bony plates of the skull do not fuse together completely during growth, explains Jeffrey Britton, M.D., a Mayo Clinic neurologist. This allows part of the brain to push through small gaps in the skull, producing an encephalocele. These small encephaloceles are typically under a half-inch in size. As a result, they are difficult to detect on MRI scans.

"Their relevance as a seizure cause has been increasingly appreciated in recent years," Dr. Britton says. "The ability to visualize them has increased with technological advances, and our ability to recognize them as clinicians and radiologists is improving."

In a retrospective study analyzing encephalocele cases in patients with epilepsy who underwent surgery from 2008 to 2020, Mayo Clinic researchers reported that the encephaloceles were initially overlooked on MRI in 31 of 34, or 91%, of cases. Expert re-review of patients' imaging as part of Mayo Clinic's weekly multidisciplinary epilepsy surgery conference has significantly improved identification of encephaloceles, says Kelsey Smith, M.D., a Mayo Clinic neurologist and first author of the study published November 2023 in Epilepsy & Behavior.

Drs. Smith and Britton are part of the integrated team of Mayo Clinic neurologists, neuroradiologists, neuropsychologists and neurosurgeons that meets weekly to discuss patient cases and recommend individualized, innovative treatment plans. They review patients' medical histories and look for brain image irregularities that may indicate an encephalocele.

"When you have someone with drug-resistant epilepsy, if you can find a lesion that's the cause of their epilepsy, it really changes the possibilities for the patient's treatment," Dr. Smith says. "That is why looking at imaging closely for abnormalities like encephaloceles is very important."

Since the Mayo Clinic study ended in 2020, the team has found roughly 20 encephaloceles in additional patients with epilepsy, Parker among them. Parker has a scar — shaped like a question mark over his left temple — to prove it.

Seizure Triggers

In May 2021, Parker was a 21-year-old junior at the University of Wisconsin-Stout in Menomonie when he first had a seizure. "I'm hanging out with a buddy, and suddenly he tells me he called an ambulance. He said, 'Dude, you just had a seizure,'" Parker recalls.

With no prior history of seizures, medication might not be started after one seizure. But a month later, Parker had a second. He underwent testing at Mayo Clinic Health System in Eau Claire, Wisconsin, and was prescribed anti-seizure medication.

For over a year, Parker was seizure-free. But after his seizure that day on the basketball court, epilepsy began to rule Parker's life. Following standard treatment, Parker's medication dosage was increased, and another medication was tried. His seizures would be under control and then return.

"It got to a scarily regular basis, where I was having the grand mal seizures about monthly, and then I was having the focal 'zone out' seizures at least weekly," says Parker, despite taking medication diligently.

Dr. Britton describes epilepsy as a temporary electrical short circuit or an electrical storm in the brain. "The one thing that different types of seizures have in common is that they result from a sudden surge in the excitability of the brain," he says.

Dangerous Complications

Epilepsy is common. Worldwide, it's estimated more than 50 million people of all ages have epilepsy, according to the World Health Organization. In the United States, more than 3 million people have epilepsy, according to the CDC. For a third of them, like Parker, medications don't control their seizures.

Dangerous complications can result from seizures — falling, drowning, motor vehicle accidents, dealing with side effects of medications and the mental stress of illness, and even sudden, unexpected death.

Parker fell and hit his head several times during seizures. A woman discovered him on the sidewalk near his office. She called 911 and his parents, thanks to an identification bracelet Parker wears.

Once, after being seizure-free for a few months, Parker crashed his car during a seizure. He shudders to think what would have happened if anyone had been seriously hurt in the accident.

Parker stopped driving. He curtailed his social activities. At work in Eau Claire, he was glad for a desk job — on carpeting — in case he fell.

"I'm not going outside and doing anything else because I just have that shadow in the back of my head," says Parker, offering thanks to his family and friends who gave him rides and support during some frustrating and frightening months.

Finding the Culprit

Parker was hospitalized in Eau Claire to monitor his seizures using an electroencephalogram (EEG), a test that measures electrical activity in the brain using small, metal electrode discs attached to the scalp. Parker's seizures were found to arise from his temporal lobe on the left side of his brain.

At Mayo Clinic in Rochester, Minnesota, that EEG information and Parker's medical history suggested the temporal lobe was the source of his seizures. Identifying the underlying encephalocele involved the use of advanced imaging:

• Fluorodeoxyglucose positron emission tomography (FDG-PET) scan, which indicates how glucose is fueling parts of the brain. Parker's scan showed a specific area of abnormal glucose uptake in the front tip of the left temporal lobe.
• 3D-rendering CT scan, which can enhance visualization of the skull base. Parker's scan revealed a defect in the floor of the left middle of the skull base and the corresponding encephalocele.
• 7T MRI scan, which can reveal subtle brain differences, and is used when the team is highly suspicious that a lesion is present but conventional imaging has not helped.

"The location of Parker's encephalocele had complex, curved anatomy with brain, bone and air close together," says Karl Krecke, M.D., a Mayo Clinic neuroradiologist, describing Parker's roughly half-inch encephalocele.

"When each of these imaging data pieces line up, we feel confident that we have found the culprit, and we can consider options to treat the patient's problem."

Surgery Date Is 'My New Birthday'

Dr. Britton delivered the news to Parker and his parents that an encephalocele likely was causing his seizures, and surgical repair was an option. "It's really a privilege to be in a position where you can be a part of a process that brings clear benefits to an individual patient," Dr. Britton says. "It's what keeps you going."

Jamie Van Gompel, M.D., a Mayo Clinic neurosurgeon, soon met with Parker and his family to discuss the risks and benefits of surgery. Research by the Mayo Clinic team has shown that a more limited surgery is best for a temporal encephalocele on the left side of the brain, which controls speech and memory.

"We went to surgery and were able to remove a small part of the brain tissue that was hurt by the encephalocele," Dr. Van Gompel says. "Parker was amazing, out of the hospital quickly and back to doing what makes Parker, Parker."

After dealing with fear and anxiety caused by his seizures, Parker had a special message for his operating room team before he went under anesthesia for his October 2023 surgery. As he lay on the operating table, he asked to make an announcement before his procedure started.

"Me and my family have gone through the greatest amount of trauma and stress for something that was out of nowhere," Parker recalls telling the team. "And knowing that you guys are the best possibility for me to get my life back, I'm seeing this as my new birthday. So, thank you."

After a recent checkup with Dr. Britton, Parker reiterates the sentiment. "I can't thank them enough. I don't know how else to put it. I've got my life back."

This article was originally published in Mayo Clinic News Network.

The post Patient Returns to Basketball After Seizure Surgery appeared first on Mayo Clinic Magazine.

At only 6 years old, Evelyn was diagnosed with rhabdomyosarcoma, a rare form of childhood cancer. Evelyn's family traveled from their home in Oregon to Mayo Clinic in Arizona where doctors are using cutting-edge technology that's revolutionizing cancer treatment for many patients like her.

Fighting Cancer With a Smile

No matter what life throws at her, Evelyn's parents say she just keeps on smiling. "That's how she looks 99% of the time even if she doesn't feel good," says her mom, Claire Owens. Evelyn's dad agrees. "She's very, very tough," says Austin Owens.

Evelyn's toughness was put to the test when pathology results revealed she had cancer.

"Everybody thought it was a cyst," recalls Claire. "Even after surgery they said it was a cyst, and then the pathology came back as cancer."

Evelyn and her doctor, Safia Ahmed, M.D., (below) and dog, Duke, (right).

What Is Rhabdomyosarcoma?

Additional tests showed the cancer was rhabdomyosarcoma (RMS). RMS begins as a growth of cells in soft tissue, like muscle. It can start anywhere in the body. RMS most often occurs in children younger than the age of 10. Symptoms depend on where the cancer starts and can include lumps under the skin, redness, swelling and pain.

As part of her treatment, Evelyn's doctors recommended radiation with innovative cancer-fighting technology called proton beam therapy. Her family traveled from their home in Oregon to Mayo Clinic in Arizona so Evelyn could receive the cutting-edge therapy.

Receiving Proton Beam Therapy

"Proton therapy allows us to treat the area we need to treat completely while protecting many of the normal tissues nearby," says radiation oncologist Safia Ahmed, M.D. "And for pediatric patients that's very important because all of their tissues are growing."

Proton beam therapy attacks and destroys cancer cells with radiation by targeting the precise location in the body where the cancer is located. "And minimizing radiation dose and radiation dose side effects to these tissues as they are growing is key. It improves their (patients') quality of life," says Dr. Ahmed.

Evelyn underwent 24 treatments of proton beam therapy over six weeks. Her parents say through it all, she stayed tough and positive.

"I can't imagine going through this with anybody else but you," says Austin about his daughter. "You should be the poster child for going through cancer and cancer treatments. I'm so proud of you and love you so much," he adds.

Evelyn is now 7 years old and back home in Oregon with her family. She will still require some chemotherapy treatment. Doctors say her prognosis looks good. Evelyn will undergo regular monitoring to make sure the cancer does not come back.

These days, Evelyn is back to enjoying the things she loves most, like riding ponies with her brother, Henry, and taking her dog, Duke, on walks.

Evelyn's smile is bigger and brighter than ever.

This article was originally published in Mayo Clinic News Network.

The post Cancer Is Tough, Evelyn Owens Is Tougher appeared first on Mayo Clinic Magazine.