Lorna Irungu

The name Lorna Irungu rekindles memories of the 1990s TV game show Omo Pick a Box, the Vijana Tugutuke voting campaign and an upbeat, energetic and feisty young woman who is always ready to use her talents to champion a cause. Lorna Irungu But Lorna’s life is not all fun and games. The 35-year-old has had more than her fair share of pain and suffering. She has battled lupus and kidney failure for more than 10 years, and her most recent ordeal has left her asking what God really wants of her. Having already undergone two kidney transplant operations, Lorna never imagined she would need a third. "What started as a minor infection, towards the end of 2007, became tuberculosis of the spine and I had to be admitted at Nairobi Hospital," Lorna told the Sunday Magazine. Cast her vote This was a great disappointment for someone who had worked so hard on the Vijana Tugutuke campaign, urging the youth to turn up and vote in the 2007 General Election. But when voting day, December 27, rolled around and she was still hospitalised, Lorna negotiated her way out of the hospital for a few hours in order to cast her vote. But this was to be the last time she would walk for many months. Her vertebrae collapsed and she had to be rushed to the ICU where she stayed, in a coma, for three weeks and only regained consciousness on January 27, last year. "During this time I was put on some strong medicine and I needed to drink one and a half litres of water to flush the medicine out of my system," Lorna says. However, because her kidney was already compromised, she started reacting to the medicine and this affected her lungs, liver and kidney. Lorna, weak, but in high spirits on Christmas Day last year. "When my kidney started to act up, my blood pressure went out of control. It also affected my heart and this is when I realised that kidneys are central to everything in the body." At this point it was evident that a third kidney transplant was necessary, but Kenyan doctors were unable to perform it. "When my sister and boyfriend heard this, they started looking for help on the Internet. They found a promising option in South Africa, but it was very expensive." They then looked to India, which they had heard was promoting medical tourism. They sent a request through the Internet and, within 48 hours, got a response from Fortis Hospital, New Delhi. Dr Vijay Kher, the hospital’s director of nephrology, talked to Lorna by phone and made travel arrangements for her. Renown for specialised treatment of kidney diseases, Fortis Hospital has performed over 1,500 kidney transplants, but in only two cases was the patient having a third transplant. Lorna was in bad shape — collapsed vertebrae, a weak heart, uncontrolled blood pressure and other complications. She needed to be stabilised before she could travel. After two weeks, Lorna made it to India. She went in for the first surgery to remove one of her four kidneys to create room for the third transplant. The second surgery, the transplant operation, lasted five hours and was a great success. "I spent the shortest time in hospital, even with the complications that can arise during a third transplant." Surgery made headlines The cost of the surgery and the weeklong hospital stay came to about $8,000 (Sh480,000) — a fraction of the prices she was quoted elsewhere. The success of the operation made the headlines throughout India. CNN also run a lead story, Kidney odyssey takes a Kenyan to India. Lorna with her brother Jomo I4 days after surgery. Jomo donated the third kidney. Her sister, Tata, who donated the second was with her throughout her stay in India. Photo/Courtesy and file/standard But what Lorna remembers most about her three-month stay in India is the relationship between the doctor and the patient. She says money was not an issue to the doctors, who were more focused on their work of healing. She had almost 20 doctors at her disposal. "Any time they came to check on me, they came as a team, and in case there were any reports about me they needed to know, the nurses, who are also specialised in taking care of kidney patients, would send it to them at once." Looking back, Lorna says her ordeal with kidney problems has shown her how blessed she is to have a loving, giving family. "My family came through and encouraged me to take a step of faith even though third transplants are very rare. They were there for me because in such cases, even if you can afford the treatment, getting a willing donor might be a problem." Lorna, who got her first kidney donation from her father and the second from her sister Tata, was concerned that she was becoming a burden to her family. "When my brother offered to donate his kidney I was touched, but I felt guilty. However, he told me it was his decision to give and my duty to receive. I am really blessed to have such a family around me." Questioned God Lorna says she would not have gone through the ordeal if it were not for her family, friends and close colleagues who kept urging her not to give up. "But mentally, I had lost hope of getting better and the mere thought of going through another surgery was too much to bear. "I was tired of always being in the hospital, asking for money for treatment and always on medicine. I asked God why I was the one who was always struggling to stay alive." But, she says, she snapped out of it and realised she had to accept her situation, change her attitude and deal with it. The rest, as they say, is history. And Lorna says she has never felt so good after surgery and feels God has given her another chance in life. "What God did for me was like he was telling me, it is not for you to get fame since all the media houses in India wrote my story, but I think God used me to show that what he did for me others can also benefit from and that with hope and a strong faith nothing is impossible for God. Kidney patients Lorna says she had supportive family and friends who went out of their way for her, even setting up a Facebook account called ‘Friends of Lorna’ to raise funds for the surgery. "However, the majority of Kenyans who find themselves in a similar situation die because they cannot afford or cannot access hospital care," she laments. This situation has prompted her to join hands with Jean Banda, a founder member of the Kenya Kidney Foundation, who has also suffered from lupus, to make a difference in the lives of many thousands of Kenyans who do not have anywhere to turn when diagnosed with kidney problems. "Some of the issues we are pushing for are affordable medicine for people suffering from kidney diseases and affordable dialysis," she says, recalling that these issues are not problems in India. She says that when one is suffering from kidney failure and has undergone a kidney transplant, medication alone costs Sh30,000. "How many Kenyans can afford that?" she asks. Lorna hopes to leave a legacy as a woman who fought for better, more affordable treatment for kidney patients, thus enabling them to live longer, happier lives. "I want us to live lives free from exploitation from drug companies and health care systems, which make it hard for ordinary people to get help."

Hasan Hosein-Kidney failure

Hasan Hosein was playing a competitive game of cricket when he began to feel unwell. But the 17-year-old from Trinidad, one of the most southern islands of the Caribbean, dismissed his weakness and headache, attributing his symptoms to the effects of traditional fasting for Ramadan. "During this month, I typically feel weak during the day when I don't eat or drink," explains Hasan, "So I was feeling pretty normal for Ramadan." When he collapsed on the field, Hasan's family first assumed he was dehydrated. But doctors soon diagnosed a serious kidney disorder, one that couldn't be treated with drugs. Hasan was in end-stage renal failure. "In a very short time, we went from watching a healthy teenager playing cricket to the idea of losing him," says Noor Hosein, Hasan's father. A kidney transplant could save Hasan's life, the family learned. Research led them to Mayo Clinic in Rochester, Minn., nearly 3,000 miles away. "We purchased one-way tickets," says Noor. "We had no idea what would happen or how long we would need to be at Mayo Clinic. We were going to stay as long as necessary." Father and son met with doctors to discuss treatment options, including transplant, and Noor asked to be tested as a possible kidney donor. He was a match. "Everyone tells me that donating my kidney was such a remarkable gesture, but it felt natural to me," says Noor. "What Mayo Clinic did was remarkable — taking my kidney and making it work for my son." After a successful transplant and recovery in Rochester, father and son returned to Trinidad, where Hasan resumed an active lifestyle. "We are grateful to have a normal life back for our family and especially for Hasan," says Noor. "He has a future ahead of him thanks to God and Mayo Clinic."

Jackson Hoeger

When Jackson Hoeger's well-behaved, happy demeanor began to disappear, his mother, Jennifer, was worried. When the kindergartener's teacher noticed a dramatic change in his handwriting, Jennifer was really worried. She and her husband, Marty, took Jackson to a specialist, but test results appeared normal. The next day, Jackson exhibited stroke-like symptoms and was rushed to the emergency room, where he experienced a long seizure — the first of many he would have in the coming weeks and months. That evening, Jackson had an MRI, but it, too, showed nothing unusual. "Over the next few weeks, Jackson saw several doctors, all of whom had different opinions as to what was causing his symptoms," says Jennifer. After Jackson experienced another major seizure, one of his physicians believed he might have epilepsy. The Hoegers traveled to Mayo Clinic for a second opinion. At Mayo, Jackson underwent six weeks of testing. When the results were in, Jackson was diagnosed with disseminated primitive neuroectodermal tumor. The tumors can be difficult to detect with conventional scanning methods. Jackson then began his long journey to recovery, which included high-dose chemotherapy and radiation treatments. A little more than a year after Jackson's symptoms began, the Hoegers finally received some good news — an MRI showed Jackson's tumor had not grown and, in fact, was improving. "Throughout this whole experience, we really appreciated everyone at Mayo — we were like a team working together," says Jennifer. "They let us be part of the plan. They asked what we thought. They also made decisions by considering Jackson himself, even though those decisions might have gone against a protocol. We felt comfortable asking questions, and they went out of their way and helped us through this."

Shelby Birch

The Birch family of Elizabeth, Minn., doesn't eat mashed potatoes anymore. The family's youngest member, Shelby, age 2, is on the ketogenic diet to control seizures from epilepsy. The high-fat, low-protein, no-carbohydrate diet prohibits potatoes. Before Shelby started the diet, her very favorite food was mashed potatoes. "When she had to take anti-seizure medication, we could always get her to take it if we mixed it in mashed potatoes," says her mother, Mary. "Shelby loved mashed potatoes. It would be too cruel for the rest of us to eat them, knowing Shelby couldn't have them too." Shelby has been on the ketogenic diet, drug-free — and seizure-free -- for several months. Her father, Kelly, learned about the diet on the Internet. Shelby's local physician referred the family to the Pediatric Epilepsy Program at Mayo Clinic in Rochester for help administering the diet. Close collaboration with an experienced dietitian knowledgeable about the diet is essential. Under the supervision of a physician, the dietitian works closely with the patient's family to carefully control the diet. For reasons unknown, the diet inhibits seizures, primarily in childhood epilepsy. Shelby tried several anti-seizure medications in the six months after her seizures began, but none succeeded in controlling her two dozen daily seizures. "My two oldest daughters, Allie, 15, and April, 13, and I followed Shelby around like a shadow so she wouldn't hit the floor when she had drop seizures," says Mary. Shelby has atonic epilepsy, which causes momentary loss of muscle control and dropping to the floor. "It seemed as if Shelby had a string attached to her head that would suddenly pull her head to the floor," says Mary. "It was traumatic for our family. The two older girls were afraid Shelby would die. We stopped going to restaurants. Shelby's development seemed to stop when her seizures began. "I was reluctant to try the ketogenic diet, but my husband said we didn't have anything to lose," says Mary. "I agreed to try it. I'm so glad I did. What this diet did for our family is miraculous. We can go to restaurants now. We take special food for Shelby. We see signs of Shelby's personality emerge now. She smiles and giggles and wants to play." Shelby's carefully controlled diet includes scrambled eggs, vegetables, butter, heavy whipping cream, skinless chicken breasts, t-bone and sirloin steak. Mary consults a dietitian at Mayo Clinic for new recipes and advice. "I called the dietitian at home one night because Shelby had a fever. Children's Tylenol contains sugar, which Shelby cannot have," says Mary. "I needed to know what I could give her. The dietitian checked and told me Shelby could have adult Tylenol but to consult our pediatrician for the correct dosage, based on Shelby's age and weight. Mayo Clinic has been such a godsend for us." The Birch family hopes Shelby can be weaned off the diet in a couple of years and remain seizure-free. In the meantime, the family continues its vigilance at protecting Shelby from the many foods not allowed in her diet. "Our 4-year-old daughter, Libby, is very protective of Shelby," says Mary. "She found Shelby with a package of crackers and screamed like another child might if a baby had a sharp knife. For the time being, our family and friends know the importance of keeping Shelby from the foods that will cause her seizures to return. They see how dramatically our life has changed since Shelby began this diet. The least we can do is not eat mashed potatoes."

Brain Tumor-Raley Mae

Raley Mae Radomske was all set to begin a new chapter in her life the summer of 2009 when the unthinkable happened. A national rodeo champion, Radomske, 18, experienced a seizure as she was readying for her move from her hometown of Ellensburg, Wash., to Las Cruces, N.M. to start college. Days after settling into her new home in New Mexico, an MRI revealed a startling blow. "I found out I had a brain tumor," recalls Raley Mae, "That (news) will change your life forever." "We were crushed and very scared," says her father, Harland. "It was the size of a golf ball." Unexpected diagnosis Horses have always been a huge part of Raley Mae Radomske's world. Her parents, Jody and Harland "Ske" Radomske, own Venture Farms — Caribou Creek Ranch in Ellensburg where they raise and breed cutting, roping and barrel performance horses. Following in her parents' footsteps, Raley Mae says she became enamored with horses at the tender age of three when her parents led her around on a little pony for the first time. She grew up learning horsemanship, cow cutting and rodeo from her parents who are both accomplished cutters. Cutting is a competition that consists of a horse and rider and a herd of cows, where the rider (cutter) has to complete a specific amount of skills in a set amount of time. Raley Mae went on to become a student leader and competitor in the sport of rodeo. In 2008, she was the National Student President of the National High School Rodeo Association (NHRSA) and was the organization's National Student Vice President in 2007. She earned four national rodeo championship titles including 2008 National High School All Around Champion Cowgirl. Her accomplishments earned her a full rodeo scholarship to attend New Mexico State University to major in marketing. That was Raley Mae's plan until she started experiencing seizures. "I had my first seizure in front of my mom. I didn't remember having a seizure. I just blacked out. I wouldn't have known unless my mom was there to witness it," Raley Mae remembers. "It was really scary," says Jody. "I had never witnessed a seizure before and I just held her up so she did not hit the floor. I grabbed my phone and called 911. Then she stopped and slowly started to respond to my questions to her. I was pretty panicked." Raley Mae's father said there were no telltale signs prior to the seizures that anything was wrong. "She went to the national rodeo finals, attended conferences and ran meetings. She competed in all her events," says Harland, who was worried his daughter might be epileptic when the seizures began. Harland said the family, which includes Raley Mae's siblings Jason, 26, and Kyle, 20, wanted a second opinion. Upon the suggestion of family friend Dr. Brian Chong, who is the chair, Division of Vascular and Interventional Radiology at the Mayo Clinic in Arizona, the Radomskes immediately traveled to Arizona to meet with Mayo Clinic surgeon Richard Zimmerman, M.D. In for the fight of her life Raley Mae's tumor presented a strong challenge from the start. The tumor, characterized as a choroid plexus papilloma, was large, accompanied by a large cyst and nestled deep in the left side of her brain. Its location would eventually affect her speech and ability to understand both written and spoken language, explains Dr. Zimmerman, adding. "That is especially troubling for a young woman starting college." If left untreated, the tumor could have become life threatening. "This type of tumor is uncommon, and occurs in young children, but less so in adolescents," says Dr. Zimmerman. He explained Raley Mae was able to function as long as she had because certain types of tumors initially grow slowly, allowing the brain to adapt to its presence until a critical point is reached. The Radomskes agreed Raley Mae's surgery would be at Mayo Clinic. "We arrived with the notion it (Mayo Clinic) was a superior facility. We were impressed with the thoroughness," says Harland. Dr. Zimmerman says he anticipated Raley Mae's tumor to be benign, however a pathology report taken during her first surgery revealed her tumor was not typical. "It appeared more cancerous than we thought," Dr. Zimmerman recalls. Since the tumor was not benign as they had initially thought, Dr. Zimmerman says the game plan had to change. Raley Mae and her family needed to know the risks involved with aggressively cutting deeper into the tumor and getting closer to the brain structures — risks that included stroke. Dr. Zimmerman said another MRI was taken to determine how much of the tumor was left and that the family opted to continue with an aggressive second surgery later that week to remove the rest of the tumor. "Both Raley and her family were brave," remembers Dr. Zimmerman. "They had faith in their religious beliefs and faith in Mayo Clinic." During her next surgery, Raley Mae's parents learned the tumor began to bleed heavily. "My wife and I immediately asked for a pastor and we prayed with him (at Mayo Clinic) for five hours," recalls Harland. "They (the staff) not only provided quality care, they really make you feel like they are interested. They are not just doing their jobs, they are really caring people." "Nora Vetto, the operating room nurse, was excellent in her job of reassuring us, letting us know what to expect, showing us compassion and helping us to maintain our confidence," says Jody. "She genuinely cared. She was exceptional." Upon waking from surgery Raley Mae wasn't able to speak and was paralyzed on her right side. "There were signs of hope the paralysis wouldn't be permanent," says Dr. Zimmerman. A few days later, Raley Mae's family and her team of Mayo Clinic caregivers experienced that hope first hand. After returning from dinner, Raley Mae's parents and brother, Jason, saw her clench her right fist and raise her right leg in bed. "We walked into her ICU room and she showed us what she could do," Jody remembers. "My husband and I started crying and praising the Lord. We were so overjoyed. It was such a happy moment. We felt like we were going to be all right now." Raley Mae's progress surprised even her doctors. "There was no question we expected to see recovery, but to happen like this (so fast) was an uncommon phenomenon" says Dr. Zimmerman. Road to recovery Raley Mae's battle to regain her life as she knew it was only beginning. "She had a global deficit in function. She had difficulty with visual perception; she had difficulty communicating and needed help with self care and mobility," recalls Carolyn Kinney, M.D., a specialist in physical medicine and rehabilitation at Mayo Clinic. "When I saw her the first day, she was in pain. She didn't want to get up, she just wanted to sleep," remembers Bernadette Luberda, a Mayo Clinic occupational therapist who was assigned to help Raley Mae with her daily rehabilitation. Raley Mae connected with Bernadette when she realized they had something in common. Bernadette overcame a brain tumor was she was 16 years old and could relate to the frustration Raley Mae was dealing with in having to re-learn basic life skills most people take for granted. At the start of her treatment at Mayo Clinic's inpatient rehabilitation unit, Raley Mae — a world class athlete — needed a walker to lean against to help her get around. She needed to re-learn how to dress herself and complete once mundane tasks such as counting money, crafting an e-mail and applying the eyeliner she loved to wear. What used to take mere minutes to do, now could take an hour or more. "Sometimes she would start crying. I would tell her it may take longer, but at least she was doing it herself. It was incredible to see her overcome the obstacles," says Bernadette. Part of Raley Mae's rehabilitation also included practicing her rodeo skills. Her family brought her a roping dummy (fake calf) and lariat rope so she could practice roping and work on regaining her coordination. Raley Mae would practice her rodeo skills on a patio outside Mayo Clinic Hospital on the Phoenix campus. Bernadette says Raley Mae regularly shared her determination to help motivate Mayo Clinic's other patients who were undergoing their own physical therapy. "We have a group called 'the breakfast club' of patients who need rehabilitation. They would eat breakfast together every morning. Raley would sit at the middle of the table and talk to all the patients and encourage them. She told them what she had been through and not to give up. Everyone looked up to her," says Bernadette. Raley Mae admits she is not positive all the time and still has moments when life's daily struggles get her down. But she says the heath scare has humbled her. "It taught me be thankful for what I've got." Back in the saddle again Raley Mae's hard work in rehabilitation paid off. After a month of living at Mayo Clinic, she was given the go ahead to return to New Mexico and resume her studies. "She is diligent and always had a hard work ethic. She made a remarkable recovery and continues to make incredible progress," says Dr. Kinney. Since her tumor was characterized as atypical (neither benign nor malignant) and there is always a chance for recurrence, Dr. Zimmerman and the staff at Mayo Clinic are keeping a close watch on Raley Mae, requiring her to come in for regular check-ups every six months. Now 19, Raley Mae is in the midst of a busy semester at school, carrying a full courseload which she balances with the speech and physical therapy sessions that are provided to her at school. And she's back in the saddle. In fact, she's even given Dr. Zimmerman a special tribute. Raley Mae re-named her barrel horse "Dr. Z." Raley Mae was cleared by her Mayo physicians last fall to ride Dr. Z and is working her way back up to being able to compete for her college rodeo team again. She says nothing was ever going to keep her away from riding. "It would be like trying to live without water," says Raley Mae.

Thyroid Cancer-Tom Sherrard

Tom Sherrard often told his wife, Kris, that they really needed to spend more time in Minnesota. Tom has vacationed in Northern Minnesota ever since he was a youngster. Today he, Kris, and daughters Megan and Sarah continue to vacation at the family summer home, where they enjoy boating, fishing, and all the lake has to offer. During 2006, they did spend more time in Minnesota, but it was farther south, at Mayo Clinic. Tom first noticed a pea-sized lump on his neck in August of 2005. When he first felt it, he thought perhaps it was a swollen gland that would go away. Because his daughter Megan was to be married in a couple weeks, he didn't want to sidetrack the family from the wedding plans. So he put off seeing a doctor. He finally made an appointment with his primary care physician in September, but ended up canceling because work got busy. He remained aware of the lump, which wasn't going away, and family members were asking about it. Finally his daughter Megan became very persistent, insisting that he needed to do something about it. His physician referred Tom to a surgeon who specializes in neck and throat surgery. The biopsies were inconclusive, but the size, texture, and movement of the lump made surgical removal a logical choice. Surgery revealed the malignancy, so Tom had a complete thyroidectomy. In a discussion with his surgeon, Tom learned that thyroid cancers are generally slow-growing and relatively easy to treat. The hospital tests, however, showed that his was a fast-growing anaplastic thyroid cancer, which is difficult to treat. To confirm its diagnosis, the hospital sent tissue to Mayo for additional pathology analysis. During his first few days out of the hospital, Tom says, "I was not really too concerned because the surgeon felt he had completely removed the malignant tissue. My wife Kris, however, is much more attentive to things, and she researched anaplastic thyroid cancer on the Internet. What she discovered scared her to death. It seemed everything she read was doom and gloom. She did the homework for me, and I'm very glad she did." Once Kris and Tom had determined how serious the condition could be, "We started going in circles trying to decide what to do and where to go to do it." Kris's Internet research turned up a few centers with experience in thyroid cancer. "Our local oncologist had no experience with anaplastic thyroid cancer. He suggested seeing a specialist and with the surgeon's referral, I was able to get an appointment at Mayo." "When I went up there for my exam and evaluation, I wasn't sure whether I required any other treatment. The surgeon was pretty comfortable that it had all been removed," Tom says. But his and Kris's research had led him to the understanding that any remaining cancer cells would be extremely serious. His first contact at Mayo Clinic was with endocrinologist Dr. Ian D. Hay. "He has a fun sense of humor and made the appointment light-hearted." More importantly, they came away from that appointment with information about the risks and hazards of anaplastic thyroid cancer. They were comforted to learn that because Tom's cancer was caught early, it wasn't necessarily the death sentence suggested by the doom and gloom stories on the Internet. Once he had decided to be treated at Mayo Clinic, he says, "I rented an apartment about six blocks away. There are plenty of facilities and many options for people who want to stay there for treatment." He set up a remote office so he was networked to his office and could work on his laptop. His circle of family and friends was supportive, with friends making an effort to send "care packages" and to support his wife during the first two or three weeks before she joined him in Rochester. Tom had heard of Mayo's reputation for many years. Even so, "It was amazing to me how well-orchestrated the treatment was." For example, he had to provide his medical history and background information only once; then every member of his treatment team had access to it. He was also pleased with the efforts the staff made to ensure that he could spend weekends at home. They scheduled his appointments as late as possible on Mondays and as early as possible on Fridays. He liked the way his team shared all the information from diagnostic scans and consulted about what was happening and what needed to happen next. He found it reassuring "just knowing that everybody's on the same page." Tom's evaluation and treatment team at Mayo included Dr. Hay, a medical oncologist (Dr. Scott H. Okuno), and a radiation oncologist (Dr. Robert L. Foote). They met with Tom to explain the procedures to be performed and how they would affect him. "The chemotherapy was a light dose," he learned, "to sensitize the cells to make the radiation more effective. It was not too intrusive in my life." Then before beginning treatment, "Dr. Foote explained the radiation therapy. He cautioned me that a lot of things are going on in your neck. He outlined the possibility of permanent damage to the vocal chords and difficulty swallowing among other things. In spite of the possible side effects, I wanted to be cautious about the cancer, and decided to go ahead with treatment and to take every step that I could to ensure the cancer would not come back." The only side effect from his chemotherapy was "about 24 hours of hiccups following each of the weekly treatments." Toward the end of his radiation treatment, Tom's neck was bright red and he had some pain in swallowing. "It was like having extreme sunburn and a real bad sore throat from a cold. The radiation redness healed surprisingly quickly. I got back to normal very quickly." "Everything went like clockwork," he says. "I was so impressed with the flow of it and the organization and I am still impressed every time I go back. Everybody throughout the facility helps you to understand what's going on. There's support everywhere you turn." He mentioned the libraries, conference rooms, and the social workers who will answer questions about personal, emotional, insurance, and financial issues. He appreciated the nurses who wanted to make sure he was able to eat balanced meals and the speech therapist that made an initial evaluation of his speech in case of problems arose later. A year and a half after completing treatment, Tom reports being basically 100 percent normal except for some dryness in the mouth and throat where the radiation killed off some of the salivary glands. He returns for follow-up visits every three or four months. "All in all, in spite of the illness, it was really a positive experience," he says. "There are so many knowledgeable, compassionate people there. I know I walked away with a new appreciation for the things that are really important. I've tried to scale back my work and take time to enjoy life with my family and friends. And by all means, when I hear of anyone with a serious illness, I immediately suggest they look into Mayo Clinic."

Stage II tumor-Karen Gibson

Working at the La Villa School of the Arts in Jacksonville, Fla., has taught Karen Gibson, 46, something about drama. But it didn't prepare her for the dramatic turn her own life would take one day last June. "It began with a casual conversation I had after a routine exam at my gynecologist's office," says Gibson. "She asked me if I had any health problems I wanted to discuss. I said, 'not really, but I had noticed recently a hardness or a lump above my belly button on my left side.' It didn't cause me any pain, and it would sort of come and go, so I didn't think much of it." Her physician ordered a computed tomography (CAT) scan and the results showed that Gibson had renal cell carcinoma (RCC), the most common form of adult kidney cancer in the United States. She was referred to Mayo Clinic in Jacksonville for surgery to remove the tumor and kidney. Adding to the swirl of emotions that follow any cancer diagnosis, she learned that RCC remains largely a mystery. The causes of the disease are not well understood, no screening test is available to enhance early detection and treatment options are limited, as are tools for predicting the effectiveness of therapies. Although it strikes about 36,000 Americans each year, it is considered rare. "The month between my diagnosis and surgery was the worst of my life," says Gibson. "They couldn't tell me the stage of the tumor until after the surgery, and I knew that if it was stage III and it had spread beyond the kidney, my odds of surviving five years were about 10 percent. I thought about my teenaged daughter. I realized I may only have five years, at best, with her." As it turned out, Gibson had a stage II tumor, which has a much better prognosis. Her surgery, done by urologist Dr. Michael Wehle, went well. With only one kidney, she watches her diet closely and tries to exercise more, but she is enjoying life. Gibson also feels good about a decision she made during her treatment last year to participate in a research effort at Mayo Clinic that aims to unravel the mystery surrounding RCC. Investigators at both the Rochester and Jacksonville campuses are asking patients with RCC to enroll in a registry that will fuel several long-range studies. "It was easy to participate, and I thought, if I can help somebody else avoid what I went through, why not," says Gibson. Alexander Parker, Ph.D., a cancer epidemiologist leading the study at Mayo in Jacksonville, wants to solve the mystery. "Improving treatment for patients with RCC is very important, but Mayo Clinic is also in the business of finding out why this cancer develops and how we can prevent it," Parker says. "Having people without the disease participate in our registry allows us to compare samples and lifestyle characteristics, to get clues as to why some people develop it and others don't, which then opens up the possibility of developing new and exciting prevention strategies." Parker and his colleagues are enrolling patients with RCC, as well as a comparison group of patients who do not have the disease. From each participant they are collecting biological samples, clinical data and detailed information on lifestyle habits using a take-home questionnaire. Follow-up surveys are then done each year to update patient status. "If in 10 years, we're still referring to RCC as 'a mystery' it would be a real tragedy," says Parker. "That's what we're trying to change with our registry effort. The valuable data and specimens we are collecting will ultimately help us examine important questions across the entire spectrum of this disease."

Brain Tumor survivor-Jacob Harpel

When 7-year-old Jacob Harpel was diagnosed with a rare brain tumor, doctors told his parents, Koreen and Paul, that it was most likely noncancerous (benign) and slow-growing and recommended a wait-and-see approach to treatment. But with the tumor causing seizures and dizzy spells, the Harpels decided to seek a second opinion. After extensive testing, a pediatric neurologist at Mayo Clinic in Rochester, Minn., recommended removing the tumor. "We were told that with surgery, there was a 50 percent chance Jacob could have permanent peripheral vision deficits looking down and to the right, and a 50 percent chance he'd experience speech or comprehension deficits or both," says Koreen. The wait-and-see approach carried risks of its own. "Without surgery the seizures would likely take over, and the tumor was growing larger," says Nicholas M. Wetjen, M.D., a pediatric neurosurgeon at Mayo Clinic in Rochester, Minn. "Jacob would likely have a lifetime of progressively worsening seizures, a significant burden to face." The Harpels opted for surgery. In August 2010, Dr. Wetjen removed the tumor. The next day, Jacob was playing piano in the main entrance of Saint Marys Hospital. "It was an amazing moment," says Koreen. "He could see down and he could remember his song. He played it beautifully. It was almost too much to grasp. There wasn't a dry eye anywhere near him. This was a true miracle for us." Nine months later, follow-up exams showed Jacob was still tumor-free, with perfect vision and no speech or comprehension deficits. And the seizures and dizzy spells? Gone. "We came to Mayo filled with so much anxiety and so much unknown," says Koreen. "We left Mayo with hope. That's the moral of the story. Jacob has a future. Dr. Wetjen gave Jacob a hopeful life. And for that we are truly grateful."

Nancy-Breast cancer survivor

My name is Nancy. I am a 2 1/2 year breast cancer survivor. Luckily, my cancer was caught by mammogram in the very early stages. It was a stage 1 cancer. I had a lumpectomy and all the lymph nodes removed under the arm on that side. The nodes were all clear. I was able to get by without chemo, but I had 35 radiation treatments. God truly blessed me. Like many women, I think I always took my yearly mammograms much too lightly. When I was told that I needed to have an ultrasound because of something suspicious, I still was not really upset. I had 2 benign cysts removed several years before. However, this time I was not so lucky. The ultrasound was followed by a core biopsy. It was definitely cancer. I could not believe it. Nobody in my family had ever had breast cancer. I had no major risk factors other than I was never able to conceive. So, I felt that God had cursed me twice---no children and now cancer. I was scared and angry. I think human nature makes us think that we have been dealt a death sentence when we're told we have the "C" word. I know that is how I felt. The night before my surgery, I went out on our deck and prayed and prayed that I would have the strength to handle whatever was ahead. I had taken care of my mom who suffered from Parkinson's disease for 8 years and lost her 2 years before. My only brother had died of a massive heart attack at the age of 51 the year before my cancer. My dad had just been place in a nursing home, because I could no longer care for him after his stroke. I felt that I had no strength left in me. I knew prayer was my only hope. When, I came in from the deck that night. I slipped into bed thinking my husband was asleep. I was still crying. He rolled over, hugged me, and told me we would fight this together. Then, he held me tightly and started praying aloud. I felt such peace come over me all of a sudden. I knew that I was going to be alright. I think I let go and let God at that moment. My surgery went well as did my radiation treatments. Seems my breast has been sore all the time since my surgery and treatments which sometimes scares me until I have my mammogram every six months and it's ok. I try to look at that constant soreness as a reminder of the blessing I received in early diagnosis and successful surgery and treatments. My prayers are with all the women out there who have been through breast cancer or who may have to go through it in the future. Also, I am a big advocate of mammograms and early detection now. Mostly, I am an advocate that prayer does truly work. I thank God daily. Good luck to you and all your readers in the fight against this terrible disease. Nancy