“It really should be called The Mayo Family”

February 8, 2010 by Lee Aase

Andrew Mork is being treated at Mayo Clinic for juvenile pilocytic astrocytoma, a rare cancer of the brain and spinal cord. Andrew’s mother, Corrie, shared their Mayo Clinic last summer via e-mail, and they also decided to tell about their experience via video when Andrew was in Rochester for appointments. Mrs. Mork’s e-mail is below, along with some video snippets and a January update:

My son Andrew left last summer (2008) for San Antonio, TX for Lackland Air Force Base for basic training. Little did we know that when we received a phone call hoping and praying that it was Andrew letting us know that everything was going well, it was a doctor on the other end telling us that they found a mass at the base of Andrew’s brain.

Andrew had a doctor at the Air Force base, Dr. Lyell Jones, who is a neurologist and had actually done his residency at Mayo Clinic with Dr. Uhm. We recently had an appointment with Dr. Uhm and he was pleased to let us know that Dr. Jones will be returning to Mayo Clinic in July after his retirement from the Air Force. (Editor’s note: Since this was written, Dr. Jones has returned to practice at Mayo Clinic.)

If it wasn’t for Dr. Jones insisting that Andrew get to the Mayo Clinic I really have no idea what the outcome would have been for him.

We have had past experiences with the Mayo Clinic about six years ago with our daughter and it was just as wonderful as it is now.

Andrew has a very rare brain and spinal cord cancer, which he finished radiation for on May 8, and on May 12 he underwent surgery for a pilonidal cyst. When this heals he will then have surgery on his hips for avascular necrosis.

It’s funny when you think about all of these problems that he has going on and yet he continues to have a positive attitude about it all. Andrew is 19 and his life has been put on hold, yet he doesn’t let it bother him. I can’t quite figure it out, but all I know is he has this amazing ability to defy the doctors and everyone else. He doesn’t listen to what could be the worst-case scenario and hasn’t from the beginning, instead he listens with his heart and soul.

Andrew’s radiation oncologist is Dr. Nadia Laack. Without her and her willingness to get the appropriate treatment for Andrew, I don’t think life would be somewhat normal for us.

It’s funny, when I flew to Texas to be with Andrew while he was in the hospital, Dr. Jones came in, introduced himself to me, looked me straight in the eyes and told me “Do you know that I haven’t had a decent night’s sleep since your son came into this hospital? I am up every night thinking about him, how we are going to get him better.“

When Andrew was in his fourth week of radiation, we were waiting for Dr. Laack to come in for Andrew’s weekly visit. After checking Andrew out, we began talking and she looked at Andrew and me and said, “Last week I went to a conference on cancers of the brain and spinal cord. I talked about your cancer with many colleagues who have dealt with patients with the same type and in the same area as yours. We discussed how many treatments and the dosage of radiation. I can now tell you that I am able to sleep soundly at night knowing that we are taking care of you appropriately. Do you know that even before I met you, I knew about you and your cancer and haven’t had a decent night’s sleep until after this conference.”

Andrew and I just laughed and told her about Dr. Jones and what he had said.

The caring and compassion of the Mayo Clinic is above anything I have ever come across. I worked in an Emergency Room for 12 years and our hospital is nothing like yours. Your attention to detail, the privacy of others, the smiles, and the compassion you give are above anything I have ever seen or experienced. We are not rushed in and out like an assembly line; you treat the patients and families with care. No matter what part Andrew and I have been to, there hasn’t been one employee who has been in a foul mood.

The Mayo Clinic should not have Clinic in its name. It really should be called The Mayo Family, because with the experience we have had over the past 8 months, it has truly been a family and not just a clinic.

Andrew is a smart kid and has not given up hope that a cure will be found for his cancer. At this point there is no cure for him. Our only hope is that his cancer is a slow growing type, so we have more years than most do.

One more thing: Last week we watched the last part of Farrah Fawcett’s story. During one part, she was reading from her journal and had said that there isn’t a day that goes by that she doesn’t think about dying from the cancer that she has.

I heard from the other side of the living room, “Huh” I looked over and asked Andrew what he meant by that. He said, “There isn’t a day that goes by that I EVER think about dying from cancer.” I said, “Really? What about the day we were told that the pathology report came back and it was cancer, you and I cried when we found out.” Andrew said that is was a shock to him to hear it, only because he really believed he didn’t have cancer. Andrew then said to me, “I couldn’t imagine going through life thinking about dying from cancer everyday. That’s not how I want to live my life, I just don’t let it bother me.”

Smart kid, I wish we could all think like him. I truly believe that with all that has happened and all that is happening currently, without the Mayo Family, Andrew wouldn’t have this positive outlook on life.

Update: Mrs. Mork sent the following in January, in advance of his nine month post-radiation checkup, which is coming up Feb. 18.

We have been returning to Mayo every three months for repeat MRI’s and check ups with Andrew’s doctors. I will say that being a parent and wanting everything to be back to “normal” hasn’t happened.

During our September 28 visit Andrew’s tumor had grown 1 mm in size, but according to the doctors they are uncertain if it is from radiation or it is actually growing. There was a “tail” of cancer cells that were going downward farther into his spinal cord and those have since disappeared. Thank the good Lord for that.

Andrew’s spirits are up and he continues to remain positive, considering he has lost a lot of weight and cannot gain it back. The radiation really took a toll on him and his appetite and continues to do so. Currently he is applying for cancer scholarships for college and we hope that he will be able to begin college in the fall of 2010.

Andrew has faced a lot of battles since the fall of 2008, but he continues to move forward and fight like a hero… my hero.

Teen regains life after bout with brain tumor

February 3, 2010 by Julie Janovsky-Mason

Raley Mae and her horse Harry

Raley Mae Radomske was all set to begin a new chapter in her life last summer when the unthinkable happened.

The 18-year-old national rodeo champion, who had just moved from Washington to New Mexico to start college, started experiencing seizures. An MRI revealed she had a brain tumor. Upon the suggestion of a family friend, Raley Mae and her parents, Harland and Jody, travelled to Arizona for treatment at Mayo Clinic.

In the video below, Raley Mae describes her care at Mayo, which included surgery and a 30-day-stay at Mayo Clinic Hospital where she received physical therapy to help regain her motor and cognitive skills. Raley Mae has since returned to Las Cruces, New Mexico, to her college studies. Her family says she is recovering well.

Raley Mae’s mom recently reported: “We were just at Mayo for her 3-month-check up.  She is doing great and had a clean MRI!! We don’t need to come back for 6 months.

Please click on the following link to watch Raley Mae describe her care at Mayo Clinic.

Raley Mae’s story was submitted by Julie Janovsky-Mason a communications consultant at Mayo Clinic Arizona.

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Our organizational heart is our competitive advantage

February 1, 2010 by Yvette Martin

In late 2009, Mayo Clinic was named an America’s Best Hospital by U.S. News & World Report. Patients who were surveyed said Mayo’s nursing staff in Phoenix, Arizona, “always listen carefully, give clear explanations and are courteous.”

Barbara, a registered nurse at Mayo’s hospital in Phoenix, shares her perspective on our competitive advantage below:

Following a recent Phoenix Coyotes game, my husband and I were waiting in line for a table at a restaurant close to the hockey arena. An elderly couple, Bill and Elaine, sat down next to us at the bar. During our conversation, we learned that they were from Winnipeg and have spent each winter in Phoenix for more than a decade. When I asked why they chose Arizona, Bill quickly responded, “Mayo Clinic.” Elaine smiled and added, “… and the hockey.” And ever since their team relocated to Phoenix, they’ve made it a point to never miss a “home game.”

It was during the winter of 1999 that Elaine began having chest discomfort during the games. It turns out that she, like myself, is a loyal fan who takes her hockey seriously.

A friend told them about a local Mayo Clinic primary care office and Elaine made an appointment since the “discomfort had become more bothersome.” After an EKG was done, the doctor called an ambulance and sent her immediately to the emergency department — she was having a heart attack.

They both expressed gratitude for Mayo Clinic and the care provided there. Bill remembered, “those were some of the smartest, kindest people I’ve ever met … they saved my bride. We’ll never go anywhere else.” At that moment my husband got a page – our table was ready. We said our good-byes and shared good wishes for our hockey team that brought us together that evening.

Fan loyalty. Not easy to earn and even harder to sustain. Yet once your heart is engaged, loyalty will propel you thousands of miles outside your comfort zone. Your priorities shift and you keep coming back for more. Bill and Elaine are only two of Mayo Clinic’s loyal fans among millions across the globe.

Recently, through a satisfaction survey, patients named Mayo Clinic, the top hospital for nursing care in U.S. News and World Report’s America’s Best Hospitals ranking. Mayo Clinic Hospital shines and carries on the tradition founded by the Mayo family over a century ago: the needs of the patient are the only needs to be considered. A cornerstone that guides our decision-making is “business as usual.” Among the many honors and accolades received by our organization by peers or colleagues, this distinction demonstrates that patients feel that they are our priority.

It is often a smile, a hand on the shoulder or the shared tears of our compassionate staff members that patients and their loved ones remember long after they have left us. In our inherently stressful, emotionally charged environment, often it’s not what patients hear us say, but how they feel when they’re in our presence. They can sense our dedication and caring as we support them on their healing journey. In my opinion, it’s our “organizational heart” that sets us apart from our counterparts.

As patients of Mayo Clinic, my husband and I have consistently received quality care delivered by professionals who serve as exceptional ambassadors of the Mayo Clinic name. We’re grateful to each staff member who has cared for us over the years. And we agree with Bill and Elaine – “we’ll never go anywhere else.” In the same way, I’ve worked in several hospitals during my 25-year R.N. career and realize that work relationships are crucial to job satisfaction and retention. I feel privileged to be part of a team of professionals — a family, who offers our patients innovative, evidence-based health care while always keeping in mind the art and heart, of healing.

To learn more about the rankings of our Arizona, Minnesota and Florida locations, visit the U.S. News & World Report web site.

This post was submitted by Phyllis Y. (Yvette) Martin, a recruitment strategist in human resources, Mayo Clinic, Arizona.

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A Gift of Love, and Life

January 28, 2010 by Lee Aase

Many people can relate to making some type of sacrifice for the one they love. For some, it’s a move far away from family and friends. For others, it’s changing jobs or schools to be closer to their beloved. For 46 year-old Don Schwabe from Boise, Idaho, it was giving a part of himself he had never imagined.

Three years ago at the age of 37, Don’s wife Heather Schwabe was diagnosed with primary sclerosing cholangitis, a chronic liver disease caused by progressive inflammation and scarring of the bile ducts in the liver. The cause is unknown but often the diagnosis is linked to a prior diagnosis of inflammatory bowel disease. Primary sclerosing cholangitis (PSC) leads to liver damage and, eventually, liver failure. Liver transplant is the only known cure. The time from first diagnosis to liver transplant is 12 to 18 years, on average.

Known for her eternal optimism, Heather tried not to think about the eventual and perhaps inevitable need for a liver transplant. That need came much sooner than anyone would have expected when Heather was diagnosed with bile duct cancer, a known complication of PSC, in July 2009 at the age of 40. Heather’s doctor from Boise, who is also a family friend, delivered the news. He and her doctors in Seattle referred them to Mayo Clinic in Rochester, Minnesota. Within two weeks, Heather and Don arrived at Mayo Clinic and began learning the implications and treatment options for Heather’s disease. It was quickly determined that, in addition to undergoing chemotherapy treatment for her bile duct cancer, Heather would soon need a liver transplant.

What neither of them would have imagined at that time was that Don would end up being Heather’s donor, and their surgeries were scheduled on the 18th anniversary of the date they met.

Don walking to see Heather after surgery

Seeing each other right after surgery

Here are a few video clips of Heather and Don telling their story – a story about the gift of love and life.

Mayo Clinic Named to Fortune “100 Best Companies to Work For” List

January 21, 2010 by Lee Aase

For the seventh straight year, Fortune magazine has named Mayo Clinic to its “100 Best Companies to Work For” list.

Mayo came in at #55, up eight spots from last year. In a related article called “Creative recession solutions,” the magazine highlighted a few initiatives from employees that helped Mayo reduce expenses in these difficult economic times.

If you’re a Mayo Clinic employee, thanks for all you contribute to make Mayo a “best place” to work, and for the creativity and energy you bring to serving our patients.

If you would like to comment on this recognition, or tell your story about what you think makes Mayo special, you can do so on the Fortune article, on our Mayo Clinic Facebook page, or in the comments below.

Ariel’s story — the mystery is solved

January 20, 2010 by Newsletter Editor

I wanted to share this story for other parents of teenagers with POTS. My daughter, Ariel, became sick in the middle of her junior year in high school. She was tired ALL the time — could barely function. She struggled through the school day, had to quit ballet and swim team. She was dizzy, faint, weak and exhausted. I took her to every doctor in our city, traveled to Riley Children’s Hospital to a problem solving clinic and Chicago. No one knew what she had, but they all had an opinion. One doctor insisted I put her on antidepressants, that she needed to exercise more (need I mention she could not climb the stairs to her room), and probably had chronic fatigue and should take counseling to learn to live with a chronic disease. I knew this was not correct and continued to search for answers for my daughter. Here was an active, beautiful, honor student, who was being told to live with this handicap. They couldn’t tell us what it was or how she got it, but she should deal with it.

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Four Words

January 18, 2010 by Newsletter Editor

This story was submitted by David Kelly from Saint Joseph, Mich.

We’ve been a part of the Mayo Experience since 1998.

Originally we began our treatment in a Chicago hospital. It was there that our two-year-old daughter, Hannah, had her first biopsy to determine what was causing a lump just below her right wrist. I’ll never forget that day after surgery when the doctor came out and told us, “I’ve done many biopsies similar to this one, and it appears that Hannah has cancer. The pathologist still needs to give his final report though.”

Hannah

Over the course of a week and a half no clear results were given to us, other than we would know as soon as they did. The doctors were even discussing sending out the biopsy slides for further study to another pathologist. The waiting game is bad enough when you’re in line for a ride at Disney World, but when you’re waiting to hear news on whether or not your child has cancer, it’s beyond description.

We had been put through the emotional ringer and weren’t sure that Chicago was the place for us. “Get yourself to Mayo,” urged a dear friend of mine. Those four words now mean the world to my family and me. Once there, we were thrilled to discover — within only a day — that it was a tumor known as fibromatosis, a soft tissue tumor that shows no sign of malignant features, and that might eventually dissipate with age.

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